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BackgroundPatient-reported outcomes (PROs) are frequently used for medical decision making, at the levels of both individual patient care and healthcare policy. Evidence increasingly shows that PROs may be influenced by patients’ response shifts (changes in interpretation) and dispositions (stable characteristics).Main textWe identify how response shifts and dispositions may influence medical decisions on both the levels of individual patient care and health policy. We provide examples of these influences and analyse the consequences from the perspectives of ethical principles and theories of just distribution.ConclusionIf influences of response shift and disposition on PROs and consequently medical decision making are not considered, patients may not receive optimal treatment and health insurance packages may include treatments that are not the most effective or cost-effective. We call on healthcare practitioners, researchers, policy makers, health insurers, and other stakeholders to critically reflect on why and how such patient reports are used.

Background: Chronic progressive neurological diseases like high grade glioma (HGG), Parkinson's disease (PD), and multiple sclerosis (MS) are incurable, and associated with increasing disability including cognitive impairment, and reduced life expectancy. Patients with these diseases have complex care needs. Therefore, timely advance care planning (ACP) is required. Our aim was to investigate timing and content of discussions on treatment restrictions, i.e., to initiate, withhold, or withdraw treatment in patients with HGG, PD, and MS, from the neurologists' perspective. Methods: We performed a national online survey amongst consultants in neurology and residents in The Netherlands. The questionnaire focused on their daily practice concerning timing and content of discussions on treatment restrictions with patients suffering from HGG, PD or MS. We also inquired about education and training in discussing these issues. Results: A total of 125 respondents [89 neurologists (71%), 62% male, with a median age of 44 years, and 36 residents (29%), 31% male with a median age of 29 years] responded. Initial discussions on treatment restrictions were said to take place during the first year after diagnosis in 28% of patients with HGG, and commonly no earlier than in the terminal phase in patients with PD and MS. In all conditions, significant cognitive decline was the most important trigger to advance discussions, followed by physical decline, and initiation of the terminal phase. Most discussed issues included ventilation, resuscitation, and admission to the intensive care unit. More than half of the consultants in neurology and residents felt that they needed (more) education and training in having discussions on treatment restrictions. Conclusion: In patients with HGG discussions on treatment restrictions are initiated earlier than in patients with PD or MS. However, in all three diseases these discussions usually take place when significant physical and cognitive decline has become apparent and commonly mark the initiation of end-of-life care. More than half of the responding consultants in neurology and residents feel the need for improvement of their skills in performing these discussions.

The majority of biobank policies and consent forms do not address post-mortem use of data for medical research, thus causing uncertainty after research participants’ death. This systematic review identifies studies examining stakeholders’ perspectives on this issue. We conducted a search in MEDLINE, CINAHL, EMBASE and Web of Science. Findings were categorised in two themes: (1) views on the use of data for medical research after participants’ death, and (2) perspectives regarding the post-mortem return of individual genetic research results. An important subtheme was the appropriate authority and degree of control over posthumous use of data. The sixteen included studies all focused on genetic data and used quantitative and qualitative methods to survey perspectives of research participants, family members, researchers and Institutional Review Board members. Acceptability of post-mortem use of data for medical research was high among research participants and their relatives. Most stakeholders thought participants should be informed about post-mortem research uses during initial consent. Between lay persons and professionals, disagreement exists about whether relatives should receive actionable genetic findings, and whether the deceased’s previous preferences can be overridden. We conclude that regulations and ethical guidance should leave room for post-mortem use of personal data for research, provided that informed consent procedures are transparent on this issue, including the return of individual research findings to relatives. Future research is needed to explore underlying causes for differences in views, as well as ethical and legal issues on the appropriate level of control by deceased research participants (while alive) and their relatives.

BACKGROUND: Timely end-of-life (EOL) discussions between patients and physicians are considered essential for high-quality EOL care, but research shows that these discussions frequently do not occur or occur late. In oncology, one barrier for timely EOL discussions is poor collaboration between oncologic specialists and GPs.OBJECTIVE: To explore interprofessional communication and coordination between oncologic specialists and GPs on EOL discussions.METHODS: We conducted in-depth interviews with 16 GPs and 14 oncologic specialists. Interviews were recorded, transcribed verbatim and analysed using qualitative content analysis.RESULTS: EOL discussions were primarily considered the role of the GP, but oncologists' perceptions of their own roles in discussing EOL issues varied. Interprofessional coordination on who discusses what and when was mostly absent. Interprofessional communication of EOL issues usually proceeded using the patient as intermediary. This functioned well but only if three essential conditions were met: the specialist being realistic to patients about limits of treatment, informing the GP adequately and the GP being proactive in initiating EOL issues in time. However, when these conditions were absent, timely EOL discussions did not seem to occur.CONCLUSIONS: EOL discussions are rarely a subject of direct interprofessional communication and mainly proceed through the patient as intermediary. For implementation of EOL discussions into regular care, earlier interprofessional communication and coordination is needed, particularly if barriers for such discussions occur.

The increasing use of telecare will profoundly change nursing care. How to understand these changes is, however, far from clear. This is because (i) studies on telecare seldom consider the situation it replaces, and (ii) current concepts and methods used to study the impact of telecare may not allow us to fully grasp these changes. We suggest that an analysis of the changing materiality of care practices is a suitable way to articulate and reflect on possible concerns. It allows us to compare care practices in the same terms before and after telecare has been introduced. To demonstrate this, we study the materiality of the classical care setting, the nursing house call, to map the situation before telecare is introduced. Building on science and technology studies, we apply four categories as heuristics to analyse materiality in care: signs, dis/enablers (or scripted things), tools and practical arrangements. We leave open the question of how material arrangements could or should be matters of concern in nursing care, and instead argue for studies that give insights into the everyday tinkering with the materiality of care that both nurses and patients need to engage in.

When critically ill neurologic patients are cognitively incapacitated, decisions about treatment options are delegated to surrogates, usually family members. We conducted qualitative interviews with 20 Dutch neurologists and residents in neurology varying in age, work experience, and workplace to investigate how they involve their patients' family members in decision-making. Their reports revealed that they ascribed 3 different, yet tightly interwoven roles to families: (1) informants about values and preferences of patients, (2) participants in care and care planning, and (3) sufferers themselves. Neurologists regarded decision-making as an integral part of end-of-life care rather than an isolated process, changing the meaning of what decision-making entails. All different roles of family members were important in end-of-life care and decision-making, instead of the single one of legal surrogate. Neurologists need to support family members in these various roles.

This paper articulates dignity as relational engagement in concrete care situations. Dignity is often understood as an abstract principle that represents inherent worth of all human beings. In actual care practices, this principle has to be substantiated in order to gain meaning and inform care activities. We describe three exemplary substantiations of the principle of dignity in care: as a state or characteristic of a situation; as a way to differentiate between socio-cultural positions; or as personal meaning. We continue our analysis by presenting cases on dignity in care related to us in focus groups with medical professionals. Our empirical ethical lens is in this paper is to analyse, not the meaning of dignity, but the way in which it emerges in practices where it is pursued, within relationships between people, technologies, places, regulations, and the values cherished by or embedded in them. We show that professional caregivers recognize in the dignity of the person they care for their own dignity; giving up on the one implies no less than giving up on the other. This ‘mirrored experience’ of dignity expresses itself in professional’s engagement with the situation. The value of this engagement, we argue, lies not primarily in realizing the particular content of the values at stake. We point to the importance of engagement itself, even if the values engaged with cannot be realized to the full, and even if competing versions of dignity are at stake simultaneously. In this way the caregivers provide us with interesting examples of moral actorship in situations of conflicting values.

BACKGROUND AND OBJECTIVE: Retrospective studies show that most parents prefer to share in decisions to forgo life-sustaining treatment (LST) from their children. We do not yet know how physicians and parents communicate about these decisions and to what extent parents share in the decision-making process. METHODS: We conducted a prospective exploratory study in 2 Dutch University Medical Centers. RESULTS: Overall, 27 physicians participated, along with 37 parents of 19 children for whom a decision to withhold or withdraw LST was being considered. Forty-seven conversations were audio recorded, ranging from 1 to 8 meetings per patient. By means of a coding instrument we quantitatively and qualitatively analyzed physicians’ and parents’ communicative behaviors. On average, physicians spoke 67% of the time, parents 30%, and nurses 3%. All physicians focused primarily on providing medical information, explaining their preferred course of action, and informing parents about the decision being reached by the team. Only in 2 cases were parents asked to share in the decision-making. Despite their intense emotions, most parents made great effort to actively participate in the conversation. They did this by asking for clarifications, offering their preferences, and reacting to the decision being proposed (mostly by expressing their assent). In the few cases where parents strongly preferred LST to be continued, the physicians either gave parents more time or revised the decision. CONCLUSIONS: We conclude that parents are able to handle a more active role than they are currently being given. Parents’ greatest concern is that their child might suffer.

Background Euthanasia and physician-assisted suicide (EAS) in patients with psychiatric disease, dementia or patients who are tired of living (without severe morbidity) is highly controversial. Although such cases can fall under the Dutch Euthanasia Act, Dutch physicians seem reluctant to perform EAS, and it is not clear whether or not physicians reject the possibility of EAS in these cases. Aim To determine whether physicians can conceive of granting requests for EAS in patients with cancer, another physical disease, psychiatric disease, dementia or patients who are tired of living, and to evaluate whether physician characteristics are associated with conceivability. A cross-sectional study (survey) was conducted among 2269 Dutch general practitioners, elderly care physicians and clinical specialists. Results The response rate was 64% (n=1456). Most physicians found it conceivable that they would grant a request for EAS in a patient with cancer or another physical disease (85% and 82%). Less than half of the physicians found this conceivable in patients with psychiatric disease (34%), early-stage dementia (40%), advanced dementia (29-33%) or tired of living (27%). General practitioners were most likely to find it conceivable that they would perform EAS. Conclusions This study shows that a minority of Dutch physicians find it conceivable that they would grant a request for EAS from a patient with psychiatric disease, dementia or a patient who is tired of living. For physicians who find EAS inconceivable in these cases, legal arguments and personal moral objections both probably play a role.

Objective:Hope, despair, and hopelessness are dynamic in nature; however, they have not been explored over time. The objective of the present study was to describe hope, hopelessness, and despair over time, as experienced by palliative care patients.Method:We employed a qualitative longitudinal method based on narrative theories. Semistructured interviews with palliative care patients were prospectively conducted, recorded, and transcribed. Data on hope, hopelessness and despair were thematically analyzed, which led to similarities and differences between these concepts. The concepts were then analyzed over time in each case. During all stages, the researchers took a reflexive stance, wrote memos, and did member checking with participants.Results:A total of 29 palliative care patients (mean age, 65.9 years; standard deviation, 14.7; 14 females) were included, 11 of whom suffered from incurable cancer, 10 from severe chronic obstructive pulmonary disease, and 8 from severe heart failure. They were interviewed a maximum of three times. Participants associated hope with gains in the past or future, such as physical improvement or spending time with significant others. They associated hopelessness with past losses, like loss of health, income, or significant others, and despair with future losses, which included the possibility of losing the future itself. Over time, the nature of their hope, hopelessness, and despair changed when their condition changed. These dynamics could be understood as voices in a singing choir that can sing together, alternate with each other, or sing their own melody.Significance of Results:Our findings offer insight into hope, hopelessness, and despair over time, and the metaphor of a choir helps to understand the coexistence of these concepts. The findings also help healthcare professionals to address hope, hopelessness, and despair during encounters with patients, which is particularly important when the patients' physical condition has changed.

Background In the ethical and clinical literature, cases of parents who want treatment for their child to be withdrawn against the views of the medical team have not received much attention. Yet resolution of such conflicts demands much effort of both the medical team and parents. Objective To discuss who can best protect a child9s interests, which often becomes a central issue, putting considerable pressure on mutual trust and partnership. Methods We describe the case of a 3-year-old boy with acquired brain damage due to autoimmune-mediated encephalitis whose parents wanted to stop treatment. By comparing this case with relevant literature, we systematically explored the pros and cons of sharing end-of-life decisions with parents in cases where treatment is considered futile by parents and not (yet) by physicians. Conclusions Sharing end-of-life decisions with parents is a more important duty for physicians than protecting parents from guilt or doubt. Moreover, a request from parents on behalf of their child to discontinue treatment is, and should be, hard to over-rule in cases with significant prognostic uncertainty and/or in cases with divergent opinions within the medical team.

Aim Paediatricians caring for severely ill children may receive requests for physician-assisted dying (PAD). Dutch euthanasia law only applies to patients over 12 who make well-considered requests. These limitations have been widely debated, but little is known about paediatricians' positions on PAD. We explored the situations in which paediatricians found PAD conceivable and described the roles of the patient and parents, the patient's age and their life expectancy. Methods We sent a questionnaire to a national sample of 276 Dutch paediatricians and carried out semi-structured interviews with eight paediatricians. Results The response rate was 62%. Most paediatricians said performing PAD on request was conceivable (81%), conceivability was independent of the patient's age and whether the patient or parent(s) requested it. The paediatricians interviewed felt a duty to relieve suffering, irrespective of the patient's age or competency to decide. When this was not possible through palliative care, PAD was seen as an option for all patients who were suffering unbearably, although some paediatricians saw parental agreement and reduced life expectancy as prerequisites. Conclusion Most Dutch paediatricians felt PAD was conceivable, even under the age of 12 if requested by the parents. They seemed driven by a sense of duty to relieve suffering.

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. (C) 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

BACKGROUND AND OBJECTIVES: Pediatric bioethics presumes that decisions should be taken in the child’s best interest. If it’s ambiguous whether a decision is in the child's interest, we defer to parents. Should parents be permitted to consider their own interests in making decisions for their child? In the Netherlands, where neonatal euthanasia is legal, such questions sometimes arise in deciding whether to hasten the death of a critically ill, suffering child. We describe the recommendations of a national Dutch committee. Our objectives were to analyze the role of competing child and family interests and to provide guidance on end-of-life decisions for doctors caring for severely ill newborns. METHODS: We undertook literature review, 7 consensus meetings in a multidisciplinary expert commission, and invited comments on draft report by specialists’ associations. RESULTS: Initial treatment is mandatory for most ill newborns, to clarify the prognosis. Continuation of treatment is conditional on further diagnostic and prognostic data. Muscle relaxants can sometimes be continued after withdrawal of artificial respiration without aiming to shorten the child's life. When gasping causes suffering, or protracted dying is unbearable for the parents, muscle relaxants may be used to end a newborn's life. Whenever muscle relaxants are used, cases should be reported to the national review committee. CONCLUSIONS: New national recommendations in the Netherlands for end-of-life decisions in newborns suggest that treatment should generally be seen as conditional. If treatment fails, it should be abandoned. In those cases, palliative care should be directed at both infant and parental suffering. Sometimes, this may permit interventions that hasten death.

xamines how dementia affects personal dignity in individuals with mild to moderate dementia from their perspective. Method. In this qualitati ve cross-sectional study, in-depth interviews were carried out with 14 individuals, aged 50–94, with mild to moderate dementia who lived at home. Verbatim transcripts were analyzed making use of the principles of thematic analysis. Results. Although mild to moderate dementia resulted in a diminished sense of personal dignity, in general par ticipants still felt reasonably dignified. The decline in personal dignity was generally caused by cognitive impairments resulting in diminished autonomy and changes to the individual’s former identity. However, the intensity with which the decline in personal dignity was experienced depended to a large degree on the social context of the individual, with a marked difference between the private sphere of the home and the external, social environment. The study gives recommendations how others can help to sustain personal dignity in people with mild to moderate dementia.

Background: Healthcare professionals’ perspectives on palliative care patients’ hope influence communication. However, these perspectives have hardly been examined. Aim: To describe healthcare professionals’ perspectives on palliative care patients’ hope found in the literature. Design: The interpretative synthesis consisted of a quality assessment and thematic analysis of included articles. Data sources: Literature search of articles between January 1980 and July 2011 in PubMed, CINAHL, PsycINFO and EMBASE and references of included studies. Search strategy: (palliat* or hospice or terminal* in title/abstract or as subject heading) AND (hope* or hoping or desir* or optimis* in title or as subject heading). Results: Of the 37 articles, 31 articles were of sufficient quality. The majority of these 31 articles described perspectives of nurses or physicians. Three perspectives on hope of palliative care patients were found: (1) realistic perspective – hope as an expectation should be truthful, and healthcare professionals focused on adjusting hope to truth, (2) functional perspective – hope as coping mechanism should help patients, and professionals focused on fostering hope, and (3) narrative perspective – hope as meaning should be valuable for patients, and healthcare professionals focused on interpreting it. Conclusions: Healthcare professionals who are able to work with three perspectives on hope may improve their communication with their palliative care patients, which leads to a better quality of care.

Objective Obtaining in-depth information from both patient and physician perspectives about what happens after a request for euthanasia or physician-assisted suicide (EAS) is refused. Methods In-depth interviews with nine patients whose EAS request was refused and seven physicians of these patients, and with three relatives of patients who had died after a request was refused and four physicians of these patients. Interviews were conducted at least 6 months after the refusal. Results A wish to die remained in all patients after refusal, although it sometimes diminished. In most cases patient and physician stopped discussing this wish, and none of the physicians had discussed plans for the future with the patient or evaluated the patient's situation after their refusal. Physicians were aware of patients’ continued wish to die. Conclusions Patients who are refused EAS may subsequently be silent about a wish to die without abandoning it. Open communication about wishes to die is important, even outside the context of EAS, because if people feel unable to talk about them, their quality of life may be further diminished. Practice implications Follow up appointments after refusal could give patients the opportunity to discuss their feelings and physicians to support them.

Rationale, aims, and objectives How to clarify the implications of complexity thinking for decision making in the intensive care unit (ICU)? Method Retrospective qualitative empirical research. Practitioners in an ICU were interviewed on how their decisions were made regarding a particular patient in a difficult, clinical situation. Transcriptions of these interviews were coded and retrieved in Maxqda, a software program. Assisted by complexity thinking, researchers focused on the decision-making process and the shift from analytic approaches to complex approaches. Results Originally, practitioners took their decisions with negligible transdisciplinary interactivity, drawing on analytical knowledge. Later on, they shifted to transdisciplinary practices, paying attention to more participation in their decision-making processes within their complex environment. Conclusions Complexity thinking demonstrates that this is a better model towards understanding transdisciplinary decision making then most analytical methodologies.

Background Many people are in need of care in the last phase of life. However, the care they receive is not always appropriate. For instance, people can receive overly aggressive treatment or can have limited access to palliative care. The term appropriate care is often used by policy makers, while it is unclear what care recipients consider as appropriate care. This study aims to identify what care patients and relatives perceive as appropriate and as inappropriate in the last phase of life, for patients suffering from different conditions. Methods We designed an online survey with open questions. Participants were recruited through organizations for patients, older people and medical professionals. Answers were analysed after data-driven coding. Forty-five patients and 547 relatives described the care they received and described why this care was appropriate or inappropriate. Results Participants described more cases of appropriate care than inappropriate care. The cases of appropriate care were diverse, but all involved care in (one or more of) five dimensions; supportive care, treatment decisions, location, the role of the patient’s wish and communication. Each of these dimensions was frequently described (39-62 %). When care was inappropriate, this mostly involved inappropriate treatment decisions (69 %; especially overtreatment was frequently mentioned), and poor communication (50 %). There was considerable consistency in what was seen as (in)appropriate care across different conditions. However, especially patients suffering from other physical diseases than cancer more often received inappropriate care. Conclusion From the perspective of patients and relatives, appropriate care in the last phase of life is a broad concept. Caregivers should be aware of the diversity of care needs in the last phase of life. Especially treatment decisions and communication can be improved.

Objective: Many incurable neurologic diseases have predictable complications during their course or at their end stage. Timely discussions of potential treatment restrictions may improve the quality of treatment decisions toward the end of life. What is known about the actual practice of these discussions? Methods: We performed a literature search in MEDLINE, EMBASE, and CINAHL for empirical studies about discussions and decisions to restrict treatment in the course of 6 conditions: motor neuron disease (amyotrophic lateral sclerosis [ALS]), primary malignant brain tumors, multiple sclerosis, stroke, Parkinson disease, and dementia (Alzheimer disease). Results: In 10 of 43 studies, the actual practice of decision-making was studied; in the remaining 33, caregivers were interviewed about this practice. Three scenarios were described: 1) acute devastating disease (severe stroke); 2) stable severe neurologic deficit with complications (post-stroke brain damage); and 3) chronic progressive disease with complications (dementia and ALS). We found no studies concerning the other conditions. In all 3 scenarios, discussions and decisions seemed to be mostly triggered by the occurrence of life-threatening situations, either caused by the disease itself (1), or complications (2 and 3, including many patients with ALS). Some ALS studies showed that timely discussion of treatment options improved end-of-life decision-making. Conclusions: The actual practice of discussions about treatment restrictions in chronic neurologic disease has hardly been studied. The currently available empirical data suggest that discussions are mainly triggered by life-threatening situations, whereas anticipation of such situations may be beneficial for patients and their families. Neurology (R) 2012;78:590-597

Evaluating the practice of ethical review by Research Ethics Committees (REC) could help protect the interests of human participants and promote scientific progress. To facilitate such evaluations, we conducted an ethnographic study of how an REC reviews research proposals during its meetings. We observed 13 meetings of a Dutch REC and studied REC documents. We coded this material inductively and categorised these codes in two repertoires of evaluation: a repertoire of rules and a repertoire of production. In the repertoire of rules the REC applies rules, weighs scientific value and burdens to the participants and makes a final judgment on a research proposal in a meeting. In the repertoire of production, REC members check documents and forms and advise researchers on how to improve their proposals and can use informal communication. Based on these findings, we think that evaluations of the practice of ethical review should take into account the fact that RECs can use a repertoire of rules and a repertoire of production to evaluate research proposals. Combining these two repertoires can be a viable option so that the REC gives researchers advice on how to improve their proposals to prevent rejection of valuable research.

Context There is much debate about euthanasia within the context of palliative care. The six criteria of careful practice for lawful euthanasia in The Netherlands aim to safeguard the euthanasia practice against abuse and a disregard of palliative treatment alternatives. Those criteria need to be evaluated by the treating physician as well as an independent euthanasia consultant. Objectives To investigate 1) whether and how palliative treatment alternatives come up during or preceding euthanasia consultations and 2) how the availability of possible palliative treatment alternatives are assessed by the independent consultant. Methods We interviewed 14 euthanasia consultants and 12 physicians who had requested a euthanasia consultation. We transcribed and analyzed the interviews and held consensus meetings about the interpretation. Results Treating physicians generally discuss the whole range of treatment options with the patient before the euthanasia consultation. Consultants actively start thinking about and proposing palliative treatment alternatives after consultations, when they have concluded that the criteria for careful practice have not been met. During the consultation, they take into account various aspects while assessing the criterion concerning the availability of reasonable alternatives, and they clearly distinguish between euthanasia and continuous deep sedation. Most consultants said that it was necessary to verify which forms of palliative care had previously been discussed. Advice concerning palliative care seemed to be related to the timing of the consultation ("early" or "late"). Euthanasia consultants were sometimes unsure whether or not to advise about palliative care, considering it not their task or inappropriate in view of the previous discussions. Conclusion Two different roles of a euthanasia consultant were identified: a limited one, restricted to the evaluation of the criteria for careful practice, and a broad one, extended to actively providing advice about palliative care. Further medical and ethical debate is needed to determine consultants' most appropriate role.

Telecare is advocated in most European countries with great, if not grandiose, promises: improving healthcare, lowering costs, solving workforce shortage. This paper does not so much question these specific promises, but rather the 'register of promising' as such, by comparing the promises with actual processes of incorporating technologies in healthcare practices. The case we study is the use of webcams in follow-up care from a Dutch rehabilitation clinic for people with severe chronic obstructive pulmonary disease (COPD). This process shows many changes and contingencies, and corresponding shifts in goals and aims. The conclusion is that when innovative technologies such as telecare are actually put to work, 'the same' technology will perform differently. In order to function at all, technology has to be tamed, it has to be tinkered with to fit the practices of the users. The technology, however, is not meekly put to use (tamed), but is unleashed as well, affecting care practices in unforeseen ways. The untenability of pre-given promises and the fluidity of locally evolving goals has important implications for the way in which innovations are promoted, as well as for the way innovative technologies may be evaluated.

Habraken JM, Pols J, Bindels PJE, Willems DL. Het zwijgen van patienten in het eindstadium van COPD. Huisarts Wet 2009;52(11):527-32. Doel Patienten in het eindstadium van COPD ervaren een slechte kwaliteit van leven en aanzienlijke problemen in hun dagelijks leven. Desondanks vragen ze niet actief om hulp. Ze krijgen daardoor niet de hulp die ze nodig hebben. Wij wilden inzicht krijgen in de redenen waarom deze patienten niet actief om hulp vragen. Methode We namen bij elf patienten zestien semigestructureerde diepte-interviews af. Resultaten Om een hulpvraag te kunnen uiten moeten patienten hun beperkingen als abnormaal beschouwen en zich realiseren dat er mogelijkheden zijn om hun situatie te verbeteren. De COPD-patienten zagen zichzelf echter alleen als ziek tijdens een acute exacerbatie, en beschouwden hun dagelijks leven als normaal. Daarnaast dachten ze dat ze niet geholpen konden worden omdat hun longen te zeer beschadigd waren. Conclusie De zorg moet zich in dit stadium niet alleen op de longfunctie concentreren, maar ook en vooral op het verbeteren van het dagelijks leven. Huisartsen moeten op een actieve manier onderzoeken aan welke praktische ondersteuning hun patienten behoefte hebben bij het op peil houden van hun dagelijkse activiteiten. Vervolgens moeten ze hun patienten op een actieve manier ondersteunen. Verder onderzoek kan uitwijzen of een dergelijke aanpak inderdaad tegemoetkomt aan de behoeften van deze patienten.

Historically, palliative care has been developed for cancer patients and is not yet generally available far patients suffering from chronic life-limiting illnesses, such as chronic obstructive pulmonary disease (COPD). To examine whether COPD patients experience similar or worse disease burden in comparison with non-small cell lung cancer (NSCLC) patients, we compared the health-related quality of life (HRQOL) scores of severe COPD patients with those of advanced NSCLC patients. We also formally updated previous evidence in this area provided by a landmark study published by Gore et al. in 2000. In updating this previous evidence, we addressed the methodological limitations of this study and a number of confounding variables. Eighty-two GOLD IV COPD patients and 19 Stage IIIb or IV NSCLC patients completed genetic and disease-specific HRQOL questionnaires. We used an individual patient data meta-analysis to integrate the new and existing evidence (total n = 201). Finally, to enhance between-group comparability, we performed a sensitivity analysis using a subgroup of patients with a similar degree of "terminality," namely those who had died within one year after study entry. Considerable differences in HRQOL were found for physical functioning, social functioning, mental health, general health perceptions, dyspnea, activities of daily living, and depression. All differences favored the NSCLC patients. The sensitivity analysis, using only terminal NSCLC and COPD patients, confirmed these findings. In conclusion, end-stage COPD patients experience poor HRQOL comparable to or worse than that of advanced NSCLC patients. We discuss these findings in the light of the notion that these COPD patients may have a similar need for palliative care. J Pain Symptom Manage 2009;37:973-981. (C) 2009 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved

Most models of patient-physician communication take decision-making as a central concept. However, we found that often the treatment course of metastatic cancer patients is not easy to describe in straightforward terms used in decision-making models but is instead frequently more erratic. Our aim was to analyse these processes as trajectories. We used a longitudinal case study of 13 patients with metastatic colorectal and pancreatic cancer for whom palliative chemotherapy was a treatment option, and analysed 65 semi-structured interviews. We analysed three characteristics of the treatment course that contributed to the ‘erraticness’ of the course: (1) The treatment (with or without chemotherapy) contained many options; (2) these options were not stable entities to be decided upon, but changed identity over the course of treatment, and (3) contrary to the closure (option X means no option Y, Z, etc.) a decision implies, the treatment course was a continuous process in which options instead remained open. When the treatment course is characterised by these many and changeable options that do not result in closure, the shared decision-making model should take these into account. More attention needs to be paid to the erratic character of the process in which the doctor has to provide continuous information that is related to the changing situation of the patient; also, flexibility in dealing with protocols is warranted, as is vigilance about the overall direction of the process.

Purpose To examine what pain and adjuvant medication is prescribed in palliative care patients at home in The Netherlands. Methods In a nationwide, representative, prospective study in general practice in The Netherlands, prescribed medication was registered in 95 general practices with a listed population of 374070 patients. The GPs identified those who received palliative care in a retrospective survey of the 2169 patients who died within the 1-year study period. We analysed the analgesics, laxatives and anti-emetics that were prescribed during the last 3 months of life for these patients. Results The response rate of the survey was 74%. 425 patients received palliative care and 73% of them were prescribed pain medication: 55% a non-opioid analgesic (paracetamol, NSAIDs), 21% a weak opioid (tramadol, codeine), and 51% a strong opioid. Relatively more younger than older patients were prescribed strong opioids, and more cancer than non-cancer patients were prescribed an analgesic. During the last 3 months of life, the proportion of patients prescribed a non-opioid or a weak opioid increased gradually. The proportion of patients prescribed a strong opioid increased considerably nearing the patient's death. About one third of the non-cancer patients were prescribed strong opioids, mostly commencing in the last 2 weeks before death. In 48% of all patients with an opioid prescription, the GP did not prescribe a laxative. Conclusions Weak opioids and laxatives are frequently omitted from pain regimens in palliative care at home in The Netherlands. Copyright (C) 2008 John Wiley & Sons, Ltd

Borgsteede SD, Graafland-Riedstra C, Deliens L, Francke AL, Van Eijk JT, Willems DL. Goede zorg in de laatste levensfase volgens patienten en hun huisarts. Huisarts Wet 2008:51(3):120-4. Achtergrond De meeste patienten willen graag thuis overlijden, waar de huisarts verantwoordelijk is voor de zorg in de laatste levensfase. Uit onderzoek is bekend aan welke aspecten van deze zorg patienten waarde hechten, en ook naar de opvattingen van huisartsen in dezen is enig onderzoek gedaan. De opvattingen van patienten en huisartsen zijn echter nog niet eerder in hun samenhang onderzocht. Doel Onderzoeken welke aspecten van de zorg in de laatste levensfase patienten en huisartsen waarderen, en dit in de context plaatsen van toekomstige ontwikkelingen in de eerstelijnsgezondheidszorg in Nederland. Methode Kwalitatieve, semigestructureerde interviews met twintig huisartsen en dertig van hun patienten. De patienten, die leden aan kanker, hartfalen of COPD, hadden een levensverwachting van minder dan zes maanden. Resultaten Patienten en huisartsen hebben vergelijkbare ideeen over wat goede zorg in de laatste levensfase inhoudt. Vier aspecten vinden zij zeer belangrijk: beschikbaarheid van de huisarts voor huisbezoeken (ook buiten kantooruren), medische competentie en samenwerking met andere professionals, aandacht, en continuiteit van zorg. Conclusie De vier kernwaarden van de zorg in de laatste levensfase kunnen gevaar lopen door ontwikkelingen in de organisatie van de eerstelijnsgezondheidszorg, die inhouden dat er minder tijd zal zijn voor huisbezoeken, dat er meer parttime werkenden zullen komen en dat de zorg buiten kantooruren steeds meer in handen komt van huisartsenposten.

OBJECTIVES: To explore and compare how Ghanaian, African-Surinamese (Surinamese), and White-Dutch patients perceive and manage antihypertensive drug treatment in Amsterdam, the Netherlands. METHODS: Qualitative study was conducted using detailed interviews with a purposive sample of 46 hypertensive patients without comorbidity who were prescribed antihypertensives. RESULTS: Patients in all the ethnic groups actively decided how to manage their prescribed antihypertensive regimens. In all the groups, confidence in the doctor and beneficial effects of medication were reasons for taking prescribed antihypertensive dosage. Particularly, ethnic-minority patients reported lowering or leaving off the prescribed medication dosage. Explanations for altering prescribed dosage comprised disliking chemical medications, fear of side effects and preference for alternative treatment. Surinamese and Ghanaian men also worried about the negative effects of antihypertensives on their sexual performance. Some Ghanaians mentioned fear of addiction or lack of money as explanations for altering prescribed dosage. Surinamese and Ghanaians often discontinued medication when visiting their homeland. Some respondents from all ethnic groups preferred natural treatments although treatment type varied. CONCLUSION: Patients' explanations for their decisions regarding the use of antihypertensives are often influenced by sociocultural issues and in ethnic-minority groups also by migration-related issues. Self-alteration of prescribed medication among Surinamese and Ghanaians may contribute to the low blood pressure (BP) control rate and high rate of malignant hypertension reported among these populations in the Netherlands. This study provides new information, which can help clinicians to understand how patients of diverse ethnic populations think about managing antihypertensive drug treatment and to address ethnic disparities in medication adherence and BP control. © 2008 Lippincott Williams & Wilkins, Inc.

Little is known about the role family physicians play when a patient deliberately hastens death by voluntarily stopping eating and drinking (VSED). The purpose of this study was to gain more insight for family physicians when confronted with patients who wish to hasten death by VSED. We aimed to describe physicians' involvement in VSED, to describe characteristics and motives of their patients, and to describe the process of VSED in terms of duration, as well as common symptoms in the last 3 days of life.We undertook a survey of a random national sample of 1,100 family physicians (response rate 72%), and 500 of these physicians received questions about their last patient who hastened death by VSED.Of the 978 eligible physicians, 708 responded (72.4%); 46% had cared for a patient who hastened death by VSED. Of the 500 physicians who received the additional questions, 440 were eligible and 285 (64.8%) responded; they described 99 cases of VSED. Seventy percent of these patients were aged older than 80 years, 76% had severe disease (27% with cancer), and 77% were dependent on others for everyday care. Frequent reasons for the patients' death wish were somatic (79%), existential (77%), and dependence (58%). Median time until death was 7 days, and the most common symptoms before death were pain, fatigue, impaired cognitive functioning, and thirst or dry throat. Family physicians were involved in 62% of cases.Patients who hasten death by VSED are mostly in poor health. It is not unlikely for family physicians to be confronted with VSED. They can play an important role in caring for these patients and their proxies by informing them of VSED and by providing support and symptom management during VSED.

In 2012 the Dutch Dying with Dignity Society (NVVE) founded the End-of-life Clinic, which provides euthanasia or help with assisted suicide at the request of people whose own doctor will not carry out euthanasia if the legal requirements of due care can been fulfilled. As part of an independent evaluation, we looked at the applications received by the End-of-life Clinic during its first year and at the outcomes of these applications. We wrote an extensive article on this subject which was published in JAMA Internal Medicine. One of the most important outcomes is that the End-of-life Clinic rejected a large percentage of the requests for its services, mainly as these came from people with psychiatric conditions. This means that the fears that some people have concerning the alleged End-of-life Clinic policy 'you ask, we comply', appear to be unfounded. On the other hand, the End-of-life Clinic is certainly not the solution for all those people whose requests to their own doctor fall on deaf ears.

Aim of this study was to explore which characteristics of nursing home residents relate to factors influencing their dignity. Questionnaires containing the Measurement Instrument for Dignity AMsterdam - for Long-Term Care facilities (MIDAM-LTC) were administered to 95 nursing home residents, residing on the general medical wards of six nursing homes in the Netherlands. Associations between residents' characteristics and each MIDAM-LTC item as well as the total number of items considerably influencing dignity were calculated. Results showed that not being optimistic, being male and/or being heavily dependent predispose nursing home residents to have their dignity undermined. Residents with these characteristics should therefore be given special attention in the provision of dignity-conserving care. Age, cultural background, religion, length of stay and socioeconomic status were very rarely related to individual MIDAM-LTC items. Knowledge of associations between characteristics and factors undermining dignity can be used to raise nursing home staff's sensitivity toward these factors.

Olsman E, Willems D, Leget C. Omgaan met hoop in de palliatieve zorg. Huisarts Wet 2016;59(1):14-6.

The ethics of hope has often been understood as a conflict between duties: do not lie versus do not destroy hope. However, such a way of framing the ethics of hope may easily place healthcare professionals at the side of realism and patients at the side of (false) hope. That leaves unexamined relational dimensions of hope. The objective of this study was to describe a relational ethics of hope based on the perspectives of palliative care patients, their family members and their healthcare professionals. A qualitative longitudinal method based on narrative theories was used. Semi-structured interviews on hope were conducted with twenty-nine palliative care patients, nineteen friends or family members, and fifty-two healthcare professionals, which were recorded and transcribed. Data on hope were thematically analyzed. The researchers wrote memos and did member checking with participants. When participants spoke about hope, they referred to power and empowerment, like the powerful bonding of hope between patients and physicians. They also associated hope with the loss of hope and suffering. Several participating healthcare professionals tried to balance both sides, which involved acknowledgment of hope and suffering. Hope and power were reflected in the ethical concept of empowerment, whereas suffering and the loss of hope were reflected in the ethical concept of compassion. Empowerment and compassion can be balanced in solicitude. In conclusion, a relational ethics of hope requires solicitude, in which healthcare professionals are able to weigh empowerment and compassion within particular relationships. Electronic supplementary material The online version of this article (doi:10.1007/s11019-015-9642-9) contains supplementary material, which is available to authorized users.

Objective To give an overview of relevant literature regarding health care needs in end-stage COPD and to identify specific areas where knowledge about needs is still lacking. Methods We conducted a structured literature review. We used Bradshaw's classification system. Results Seventy-seven publications were found. Ten publications were included in the review. The results reported cover a wide range of subjects, all regarded as health care needs. Most reported on ‘felt need’, i.e. needs that are mentioned by patients themselves. Results on ‘normative need’ (based on expert judgement) were lacking. Conclusion The literature about the health care needs of patients in the end-stage of COPD is sparse, and there is no commonly accepted definition of health care needs. Looking at the increasing demand for end of life care for COPD patients, there is a clear need for further research on this subject. Practice implications We especially need to focus on agreement between experts and professionals so that guidelines can be developed. To attend to the unfulfilled needs of end-stage COPD patients, the delivery of health care should be re-examined carefully.

Summary Background The high costs of new disease-modifying, but non-curative, treatments in advanced cancer are increasingly regarded as problematic. Little is known about oncologists’ beliefs regarding their ethical obligations for cost considerations about these types of treatments. Participants and Methods This study used in-depth interviews to explore how physicians in The Netherlands view their role regarding the cost of potentially beneficial but expensive drugs, especially for new disease-modifying treatments in advanced cancer. Thirty-six physicians, 19 physicians caring for patients with advanced cancer and 17 physicians participating in four national oncology guideline committees, were interviewed. Results Physicians identified cost considerations on three levels: individual patient care, hospital policies and national guideline development. Generally, physicians were reluctant to consider costs in individual patient care, believing this compromised their ethical obligations. They did consider costs relevant at the level of hospital policies regarding coverage for drugs. They were divided regarding the role of cost considerations in national practice guideline development. Conclusions The distinctive levels of decision-making were understood to be morally relevant as physicians separated their role as direct care provider from that of taking part in decisions about coverage. Because of the fundamental tension between the physician obligation to act in the best interest of the individual patient, the vulnerability of having a life-threatening illness and the inevitability of sharing resources in modern health care, cost considerations will always be problematic for physicians. The roles physicians play at different levels, especially at the levels of hospital policies and national practice guidelines, should further be developed and explicated.

Objective Public opinion and professional organisations dominate the euthanasia debate, and there is a need to understand the opinions of people confronted with euthanasia. The aim of this study was to investigate whether patients and their GPs talk about euthanasia, and if so, how they communicate about this. Methods Qualitative, semi-structured interviews were held with 20 GPs and 30 of their patients in primary care in the Netherlands, where euthanasia is legalised. The patients had a life expectancy of less than 6 months, and cancer, heart failure or chronic obstructive pulmonary disease as underlying disease. Results Many patients did not communicate about euthanasia with their GP. Neither the patient nor the GP were clear in formulating their expectations concerning future decision making. Conclusion The initial patient–GP communication consisted of an exchange of opinions about situations in which euthanasia would be desirable. GPs had different opinions about who should initiate communication, and found it difficult to judge the right moment to talk. Practice implications It is essential to pay attention to education in communication about dying and euthanasia and to train the GPs to gain insight in the patient's end-of-life preferences, and to direct care at the best possible quality of life.

Treatments and interventions used to care for children in emergencies should be based on strong evidence. Well-designed clinical trials investigating these interventions for children are therefore indispensable. Parental informed consent is a key ethical requirement for the enrollment of children in such studies. However, if time is limited because of an urgent need for intervention, there are additional ethical challenges to adequately support the informed consent process. The acute situation and associated psychological impact may compromise the ability of parents to give informed consent. Little evidence exists to guide the process of consent seeking for a child’s research participation when time is limited. It is also unclear in what circumstances alternatives to prospective informed consent could be applied. This article describes possible options to manage the informed consent process in an appropriate, practical, and, we believe, ethical way when time is limited.

Importance Right to Die NL, an organization in the Netherlands that advocates for the option of euthanasia, founded the End-of-Life Clinic in 2012 to provide euthanasia or physician-assisted suicide for patients who meet all legal requirements but whose regular physicians rejected their request. Many patients whose requests are rejected have less common situations, such as a psychiatric or psychological condition, dementia, or being tired of living. Objective To study outcomes of requests for euthanasia or physician-assisted suicide received by the clinic and factors associated with granting or rejecting requests. Design Analysis of application forms and registration files from March 1, 2012, to March 1, 2013, the clinic’s first year of operation, for 645 patients who applied to the clinic with a request for euthanasia or physician-assisted suicide and whose cases were concluded during the study period. Main Outcomes and Measures A request could be granted, rejected, or withdrawn or the patient could have died before a final decision was reached. We analyzed bivariate and multivariate associations with medical conditions, type of suffering, and sociodemographic variables. Results Of the 645 requests made by patients, 162 requests (25.1%) were granted, 300 requests (46.5%) were refused, 124 patients (19.2%) died before the request could be assessed, and 59 patients (9.1%) withdrew their requests. Patients with a somatic condition (113 of 344 [32.8%]) or with cognitive decline (21 of 56 [37.5%]) had the highest percentage of granted requests. Patients with a psychological condition had the smallest percentage of granted requests. Six (5.0%) of 121 requests from patients with a psychological condition were granted, as were 11 (27.5%) of 40 requests from patients who were tired of living. Conclusions and Relevance Physicians in the Netherlands have more reservations about less common reasons that patients request euthanasia and physician-assisted suicide, such as psychological conditions and being tired of living, than the medical staff working for the End-of-Life Clinic. The physicians and nurses employed by the clinic, however, often confirmed the assessment of the physician who previously cared for the patient; they rejected nearly half of the requests for euthanasia and physician-assisted suicide, possibly because the legal due care criteria had not been met.

Objective While generally two phases of prenatal genetic counseling are distinguished, i.e. pre- and post-test counseling, we revealed a third form of communication during the testing procedure. The content of this intermediate communication was explored. Methods A secondary analysis was performed on data obtained in another observational study, which was focussed on how indefinite testing results are clarified. Thirteen testing trajectories in which communication with parents took place during the testing procedure were further analysed. Results In the majority of cases the content of intermediate communication was similar to the content of pre-test counseling. In four cases the content was different, because the communication involved the parents in decision-making about a testing result, which was still being processed. Conclusion Communication in (prenatal) genetic testing is not always restricted to separate phases, but can be an ongoing process occurring parallel to, and sometimes even intertwined with, the testing process. The advocated model of shared decision-making might work better once it is determined if the decision concerns the area wherein the provider is the expert, or the patient. Practice implications Further research into the process of continuing decision-making could clarify how providers’ and patients’ responsibilities regarding the diagnostic process are distributed. Meanwhile, the possible occurrence of continuous decision-making should be mentioned in (prenatal) genetic counseling.

Oncologists disagree if chemotherapy in advanced cancer can improve quality of life (QoL), to prolong duration of life, or both. The objective of this study was to clarify the main treatment intention of palliative chemotherapy (PCT): the prolongation of life (PoL); or QoL. Randomized controlled clinical trials of PCT in advanced colorectal cancer that included HRQoL assessment were selected from PubMed and reviewed. Authors' conclusions were based on both PoL- and QoL-related outcomes. However, if PoL and QoL outcomes of the experimental arm were opposite, which was the case in 13 out of 28 trials, the authors generally based their conclusion on PoL outcomes. Authors' conclusions focused mainly on Pol.-related outcomes, while QoL-related outcomes were of overriding importance in only 1/28 case. QoL can therefore not be considered as the main outcome of PCT. The review shows that in the context of chemotherapy in advanced colorectal cancer, 'palliative' refers to a life-prolonging intention, whereas within palliative care it refers to an improvement in QoL. (c) 2005 Elsevier Ltd. All rights reserved.

Objective: The most recent WHO definition of palliative care regards living as actively as possible as an important aim. We explored, over a 1-year period, the work this involves for patients with end-stage heart failure. Design: Prospective longitudinal multiple case study using qualitative interview techniques. Participants: Thirty-one respondents from two hospitals who fulfilled one or more of the following criteria: NYHA III or IV, ejection fraction B/25%, at least one hospitalization for heart failure. Main outcomes: Types and content of patient work involved in living with end-stage heart failure. Results: For patients with advanced heart failure, work consisted mainly of four types of tasks, as identified by Glaser and Strauss: ‘managing illness’, ‘everyday work to keep life going’, ‘biographical work’ and ‘arrangement work’. Conclusions: Systematic attention to patient work, for example using these four categories, could improve the quality of care from the patient’s perspective.

There is a lack of clear definition and clear inclusion criteria in palliative care research. The aim of this study was to describe consequences of three inclusion criteria in the build up of different study populations, studied in terms of size, number of doctor-patient contacts and demographic characteristics. General practitioners received a questionnaire for all patients who died during the second Dutch National Survey of General Practice ( n = 2194), to determine whether (1) patients received non-curative treatment; (2) patients received palliative care; and (3) death was expected (total response rate= 73%). The criterion ‘death was expected’ included most patients (62%) followed by ‘palliative care’ (46%) and ‘noncurative treatment’ (39%). Similarity between the definition-based populations was fair to moderate. More ‘palliative care’ and ‘death was expected’ in patients who had cancer than ‘non-curative treatment’ patients. The conclusions show substantial differences in populations according to the different inclusion criteria used to select them. Future research in palliative care should acknowledge the limitations of using certain inclusion criteria and explore potential bias.

The objective of this review was to gain understanding about unexpected findings in prenatal cytogenetic diagnosis. This category of results might be excluded from prenatal testing when new molecular tests such as I-FISH and QF-PCR will be applied in a future scenario of targeted testing. The literature was systematically searched for publications wherein the term unexpected or a synonym refers to testing results with specific problems. On the selected articles a qualitative analysis was performed, using the methods of cross-case analysis and within-case analysis. Sixteen articles published between 1979 and 2003 were selected. Analysis led to the classification of four problems of unexpected findings: I. unexpected for professionals; II. unexpected for patients; III. uncertainty; IV. other difficult counselling issues. We conclude that currently the problems of unexpected findings relate only slightly to their unexpected character. Instead, the main problems Of unexpected findings relate to uncertainty and other aspects which create difficult counselling issues. As such, unexpected findings can be distinguished only gradually from standard results. Before targeted testing can be applied it is necessary to establish exact criteria in order to discern unexpected findings from standard testing results. (c) 2004 Elsevier Ireland Ltd. All rights reserved

Klinkenberg M, Willems D. De laatste levensfase van ouderen: aandachtspunten voor de huisarts. Huisarts Wet 2005;48(2):59-63.

Willems DL, Veldhuis M. Vormen van selectie aan de poort en hun effecten. Een literatuuroverzicht. Huisarts Wet 2004;47(13):625-30. Achtergrond Gegevens over de effectiviteit van de poortwachter spelen nauwelijks een rol in de discussies over de wenselijkheid van de poortwachtersfunctie. Wij deden een literatuuronderzoek naar het effect op passend zorggebruik. Methoden Searches in verschillende elektronische databanken en in Huisarts en Wetenschap en Medisch Contact. Resultaten Wij vonden 13 onderzoeken van wisselende kwaliteit, waarin sterk verschillende triagevormen werden bestudeerd. Triage bleek een aanzienlijke vermindering van onnodig eerstehulpbezoek te bewerkstelligen (bij kinderen tot 75% minder). Bij volwassenen met niet-acute hartaandoeningen of met luchtweginfecties was er geen duidelijk verschil in zorggebruik. De meeste onderzoeken lieten geen nadelige effecten zien in de zin van gemiste pathologie of ontoereikende zorg. Er zijn aanwijzingen dat patienten met zeldzame aandoeningen beter af zijn met directe toegang tot specialisten. Conclusie Empirisch onderzoek naar de effectiviteit van de poortwachter is schaars en van wisselende kwaliteit en komt grotendeels uit de VS. De poortwachter lijkt niet bij alle gezondheidsproblemen passende zorg te bevorderen. Verder prospectief onderzoek, bij voorkeur internationaal vergelijkend van aard, is nodig. Dit artikel is een bewerking van het tweede hoofdstuk van: Willems DL, Veldhuis M. Wegen in de zorg. Dilemma's, keuzen en afwegingen in de spreekkamer. Assen: Van Gorcum, 2002.

Objective: To explore, over a one-year period, the ideas and attitudes of patients with end-stage cardiac failure concerning dying. Design: Prospective longitudinal multiple case study using qualitative interview techniques. Participants: Thirty-one patients from two hospitals who fulfilled one or more of the following criteria: NYHA III or IV, ejection fractionB >25%, at least one hospitalization for heart failure. Main outcomes: Statements of patients with advanced heart failure, expressed in semi-structured interviews, concerning the quality of dying and medical decisions at the end of life. Results: Many respondents only thought about death during exacerbations. Mentioned aspects of appropriate dying include: a degree of usefulness, prognostic knowledge, appropriate duration and mental awareness. Few respondents were in favour of euthanasia or suicide, but all wanted life-prolonging treatment to be withheld or withdrawn when appropriate. Conclusions: Our study found some elements of ‘appropriate dying’ that differ from other studies and that are relatively specific for advanced heart failure. The tendency of patients not to think about death raises ethical concerns.

Evidence based medicine is rightly at the core of current medicine. If patients and society put trust in medical professional competency, and on the basis of that competency delegate all kinds of responsibilities to the medical profession, medical professionals had better make sure their competency is state of the art medical science. What goes for the ethics of clinical trials goes for the ethics of medicine as a whole: anything that is scientifically doubtful is, other things being equal, ethically unacceptable. This particularly applies to so called orphaned fields of medicine, those areas where medical research is weak and diverse, where financial incentives are lacking, and where the evidence regarding the aetiology and treatment of disease is much less clear than in laboratory and hospital based medicine. Examples of such orphaned fields are physiotherapy, psychotherapy, medical psychology, and occupational health, which investigate complex syndromes such as RSI, whiplash, chronic low back pain, and chronic fatigue syndrome. It appears that the primary ethical problem in this context is the lack of attention to the orphaned fields. Although we agree that this issue deserves more attention as a matter of potential injustice, we want to argue that, in order to do justice to the interplay of heterogeneous factors that is so typical of the orphaned fields, other ethical models than justice are required. We propose the coordination model as a window through which to view the important ethical issues which relate to the communication and interaction of scientists, health care workers, and patients.

Background: In an overview of quality-of-life questionnaires that have been used to measure treatment effects in clinical trials in congestive heart failure (CHF), it was concluded that ‘no QoL instrument has measured quality of life in CHF trials in a reliable or reproducible fashion’ and that the usefulness of these instruments in clinical trials was hampered by a lack of sensitivity to changes in health status. Aim: The aim of our study was to qualitatively explore issues of validity, specificity, and sensitivity with regard to the Minnesota Living with Heart Failure (MLHF) questionnaire in patients with severe heart failure. Methods: We included 31 patients with severe heart failure in a 2-year prospective longitudinal case study. Each patient was interviewed two or three times in a semi-structured way, resulting in a total of 76 interviews. We used simple qualitative techniques such as respondent observation and respondent debriefing to collect data on practical and interpretative problems that patients experience in conducting the task of completing the questionnaire. Results: The introduction to the questionnaire, which contains essential instructions, was almost never read. Patients did not interpret items as intended. Some items posed problems to respondents because of their wording or because they were considered not applicable to the respondents' circumstances. Conclusions: Our findings suggest that the MLHF does not measure the concept that it is intended to measure, but our study does not provide a remedy. However, problems regarding individual items and response categories can be remedied.

This population-based study employing after-death interviews with proxies describes older persons' preferences regarding medical care at the end of life. Interviews were held with 270 proxy respondents of 342 deceased persons (age range 59-91) in the Netherlands, The deceased were respondents to the Longitudinal Aging Study Amsterdam. The prevalence of advance directives (ADs), preferences for medical decisions at the end of life (i.e. withholding treatment, physician-assisted suicide euthanasia) and preferences about the focus of treatment in the last week of life (i.e. comfort care versus extending life) were examined. Written ADs were present in 14% of the sample. A quarter had designated a surrogate decision-maker. Co-morbidity and perceived self-efficacy (PSE) were positively associated with ADs. About half the sample had expressed a preference in favour or against one or more medical decisions at the end of life. Predictors positively associated with expressing a preference were co-morbidity, dying from cancer, and PSE. Being religious was negatively associated with expressing a preference. The knowledge of the proxy regarding the older person's preference for the focus of treatment was dependent on the patient's symptom burden as perceived by the proxy. The majority of older persons had died without either an AD, or having expressed preferences for end-of-life care. Stimulating the formulation of ADs may help professionals who work with older people to understand these preferences better, especially in the case of non-cancer patients and those with low PSE.