Patients' perspectives and the perceptions of healthcare providers in the treatment of early rectal cancer; a qualitative study.

BACKGROUND: Shared decision-making has become of increased importance in choosing the most suitable treatment strategy for early rectal cancer, however, clinical decision-making is still primarily based on physicians' perspectives. Balancing quality of life and oncological outcomes is difficult, and guidance on patients' involvement in this subject in early rectal cancer is limited. Therefore, this study aimed to explore preferences and priorities of patients as well as physicians' perspectives in treatment for early rectal cancer. METHODS: In this qualitative study, semi-structured interviews were performed with early rectal cancer patients (n = 10) and healthcare providers (n = 10). Participants were asked which factors influenced their preferences and how important these factors were. Thematic analyses were performed. In addition, participants were asked to rank the discussed factors according to importance to gain additional insights. RESULTS: Patients addressed the following relevant factors: the risk of an ostomy, risk of poor bowel function and treatment related complications. Healthcare providers emphasized oncological outcomes as tumour recurrence, risk of an ostomy and poor bowel function. Patients perceived absolute risks of adverse outcome to be lower than healthcare providers and were quite willing undergo organ preservation to achieve a better prospect of quality of life. CONCLUSION: Patients' preferences in treatment of early rectal cancer vary between patients and frequently differ from assumptions of preferences by healthcare providers. To optimize future shared decision-making, healthcare providers should be aware of these differences and should invite patients to explore and address their priorities more explicitly during consultation. Factors deemed important by both physicians and patients should be expressed during consultation to decide on a tailored treatment strategy.

Moral Challenges of Nurses and Volunteers in Dutch Palliative Care. A Qualitative Study.

Objective: To identify moral challenges experienced by nurses and volunteers in palliative care. Methods: A qualitative hermeneutic research design was used. Interviews with nurses (N = 10) and volunteers (N = 4) working in palliative care, in-home care, and hospice setting. Participants were recruited through maximum variation, a purposive sampling technique. Transcriptions were analyzed using qualitative thematic content analysis and open coding. Results: Two themes were identified, each with three subthemes: theme (A) Moral challenges regarding organizational and professional aspects contained the subthemes (1) dealing with protocols and regulations, (2) different professional perspectives on good care, and (3) limits of professionalism. Theme (B) Moral challenges regarding the patient and their family members contained the subthemes (1) dealing with the patient's wishes, (2) the patient's wish to die, and (3) dealing with family members. Conclusion: Nurses and volunteers working in palliative care are confronted with a wide range of moral challenges. Insight into 'real-world ethical challenges' of healthcare providers is important to provide adequate support to nurses and volunteers working in palliative care.

Regulating the international surrogacy market:the ethics of commercial surrogacy in the Netherlands and India.

It is unclear what proper remuneration for surrogacy is, since countries disagree and both commercial and altruistic surrogacy have ethical drawbacks. In the presence of cross-border surrogacy, these ethical drawbacks are exacerbated. In this article, we explore what would be ethical remuneration for surrogacy, and suggest regulations for how to ensure this in the international context. A normative ethical analysis of commercial surrogacy is conducted. Various arguments against commercial surrogacy are explored, such as exploitation and commodification of surrogates, reproductive capacities, and the child. We argue that, although commodification and exploitation can occur, these problems are not specific to surrogacy but should be understood in the broader context of an unequal world. Moreover, at least some of these arguments are based on symbolic rhetoric or they lack knowledge of real-world experiences. In line with this critique we argue that commercial surrogacy can be justified, but how and under what circumstances depends on the context. Surrogates should be paid a sufficient amount and regulations should be in order. In this article, the Netherlands and India (where commercial surrogacy was legal until 2015) are case examples of contexts that differ in many respects. In both contexts, surrogacy can be seen as a legitimate form of work, which requires the same wage and safety standards as other forms of labor. Payments for surrogacy need to be high enough to avoid exploitation by underpayment, which can be established by the mechanisms of either minimum wage (in high income countries such as the Netherlands), or Fair-Trade guidelines (in lower-middle income countries such as India). An international treaty governing commercial surrogacy should be in place, and local professional bodies to protect the interests of surrogates should be required. Commercial surrogacy should be permitted across the globe, which would also reduce the need for intended parents to seek surrogacy services abroad.

A Qualitative Study on Experiences and Perspectives of Members of a Dutch Medical Research Ethics Committee.

The aim of this research was to gain insight into the experiences and perspectives of individual members of a Medical Research Ethics Committee (MREC) regarding their individual roles and possible tensions within and between these roles. We conducted a qualitative interview study among members of a large MREC, supplemented by a focus group meeting. Respondents distinguish five roles: protector, facilitator, educator, advisor and assessor. Central to the role of protector is securing valid informed consent and a proper risk-benefit analysis. The role of facilitator implies that respondents want to think along with and assist researchers in order to help medical science progress. As educators, the respondents want to raise ethical and methodological awareness of researchers. The role of advisor implies that respondents bring in their own expertise. The role of assessor points to contributing to the overall evaluation of the research proposal. Various tensions were identified within and between roles. Within the role of protector, a tension is experienced between paternalism and autonomy. Between the role of protector and facilitator tensions occur when the value of a study is questioned while risks and burdens for the subjects are negligible. Within the role of assessor, a tension is felt between the implicit nature of judgments and the need for more explicit formulations. Awareness of various roles and responsibilities may prevent one-sided views on MREC work, not only by members themselves, but also by researchers. Tensions within and between the roles require reflection by MREC members.

How to Deal With Relatives of Patients Dying in the Hospital? Qualitative Content Analysis of Relatives' Experiences.

CONTEXT: Hospital care and communication tend to be focused on the individual patient, and decision making is typically based on the principle of individual autonomy. It can be questioned whether this approach is adequate when a patient is terminally ill. OBJECTIVES: Our aim was to explore the involvement and experiences of relatives in the hospital during the patient's last phase of life. METHODS: This study was embedded in a retrospective questionnaire study on the quality of dying of a consecutive sample of patients who died in a general university hospital in The Netherlands. We performed a secondary qualitative analysis of relatives' comments and answers to open questions. Relatives of 951 deceased adult patients were asked to complete a questionnaire; 451 questionnaires were returned and analyzed for this study. RESULTS: Relatives expressed a need for 1) comprehensible, timely, and sensitive information and communication, 2) involvement in decision making, 3) acknowledgment of their position, 4) being able to trust health care staff, and 5) rest and privacy. When relatives felt that their role had sufficiently been acknowledged by health care professionals (HCPs), their experiences were more positive. CONCLUSION: Relatives emphasized their relation with the patient and their involvement in care of the patient dying in the hospital. An approach of HCPs to care based on the concept of individual autonomy seems inadequate. The role of relatives might be better addressed by the concept of relational autonomy, which provides HCPs with opportunities to create a relationship with relatives in care that optimally addresses the needs of patients.

Evaluation and perceived results of moral case deliberation: A mixed methods study.

BACKGROUND: Moral case deliberation is increasingly becoming part of various Dutch healthcare organizations. Although some evaluation studies of moral case deliberation have been carried out, research into the results of moral case deliberation within aged care is scarce. RESEARCH QUESTIONS: How did participants evaluate moral case deliberation? What has moral case deliberation brought to them? What has moral case deliberation contributed to care practice? Should moral case deliberation be further implemented and, if so, how? RESEARCH DESIGN: Quantitative analysis of a questionnaire study among participants of moral case deliberation, both caregivers and team leaders. Qualitative analysis of written answers to open questions, interview study and focus group meetings among caregivers and team leaders. PARTICIPANTS AND RESEARCH CONTEXT: Caregivers and team leaders in a large organization for aged care in the Netherlands. A total of 61 moral case deliberation sessions, carried out on 16 care locations belonging to the organization, were evaluated and perceived results were assessed. ETHICAL CONSIDERATIONS: Participants gave informed consent and anonymity was guaranteed. In the Netherlands, the law does not prescribe independent ethical review by an Institutional Review Board for this kind of research among healthcare professionals. FINDINGS: Moral case deliberation was evaluated positively by the participants. Content and atmosphere of moral case deliberation received high scores, while organizational issues regarding the moral case deliberation sessions scored lower and merit further attention. Respondents indicated that moral case deliberation has the potential to contribute to care practice as relationships among team members improve, more openness is experienced and more understanding for different perspectives is fostered. If moral case deliberation is to be successfully implemented, top-down approaches should go hand in hand with bottom-up approaches. CONCLUSION: The relevance of moral case deliberation for care practice received wide acknowledgement from the respondents. It can contribute to the team's cohesion as mutual understanding for one another's views is fostered. If implemented well, moral case deliberation has the potential to improve care, according to the respondents.

Ethical considerations of worksite health promotion: an exploration of stakeholders' views.

BACKGROUND: Developing, implementing and evaluating worksite health promotion requires dealing with all stakeholders involved, such as employers, employees, occupational physicians, insurance companies, providers, labour unions and research and knowledge institutes. Although worksite health promotion is becoming more common, empirical research on ethical considerations of worksite health promotion is scarce. METHODS: We explored the views of stakeholders involved in worksite health promotion in focus group discussions and we described the ethical considerations that result from differences between these views. The focus group discussions were organised per stakeholder group. Data were analysed according to the constant comparison method. RESULTS: Our analyses show that although the definition of occupational health is the same for all stakeholders, namely 'being able to perform your job', there seem to be important differences in the views on what constitutes a risk factor to occupational health. According to the employees, risk factors to occupational health are prevailingly job-related. Labour unions agree with them, but other stakeholders, including the employer, particularly see employee-related issues such as lifestyle behaviour as risk factors to occupational health. The difference in definition of occupational health risk factors translates into the same categorisation of worksite health promotion; employee-related activities and work-related activities. The difference in conceptualisation of occupational health risk factors and worksite health promotion resonates in the way stakeholders understand 'responsibility' for lifestyle behaviour. Even though all stakeholders agree on whose responsibility lifestyle behaviour is, namely that of the employee, the meaning of 'responsibility' differs between employees, and employers. For employees, responsibility means autonomy, while for employers and other stakeholders, responsibility equals duty. This difference may in turn contribute to ambivalent relationships between stakeholders. CONCLUSION: All stakeholders, including employees, should be given a voice in developing, implementing and evaluating worksite health promotion. Moreover, since stakeholders agree on lifestyle being the responsibility of the employee, but disagree on what this responsibility means (duty versus autonomy), it is of utmost importance to examine the discourse of stakeholders. This way, ambivalence in relationships between stakeholders could be prevented.

Continuous sedation until death: the everyday moral reasoning of physicians, nurses and family caregivers in the UK, The Netherlands and Belgium.

BACKGROUND: Continuous sedation is increasingly used as a way to relieve symptoms at the end of life. Current research indicates that some physicians, nurses, and relatives involved in this practice experience emotional and/or moral distress. This study aims to provide insight into what may influence how professional and/or family carers cope with such distress. METHODS: This study is an international qualitative interview study involving interviews with physicians, nurses, and relatives of deceased patients in the UK, The Netherlands and Belgium (the UNBIASED study) about a case of continuous sedation at the end of life they were recently involved in. All interviews were transcribed verbatim and analysed by staying close to the data using open coding. Next, codes were combined into larger themes and categories of codes resulting in a four point scheme that captured all of the data. Finally, our findings were compared with others and explored in relation to theories in ethics and sociology. RESULTS: The participants' responses can be captured as different dimensions of 'closeness', i.e. the degree to which one feels connected or 'close' to a certain decision or event. We distinguished four types of 'closeness', namely emotional, physical, decisional, and causal. Using these four dimensions of 'closeness' it became possible to describe how physicians, nurses, and relatives experience their involvement in cases of continuous sedation until death. More specifically, it shined a light on the everyday moral reasoning employed by care providers and relatives in the context of continuous sedation, and how this affected the emotional impact of being involved in sedation, as well as the perception of their own moral responsibility. CONCLUSION: Findings from this study demonstrate that various factors are reported to influence the degree of closeness to continuous sedation (and thus the extent to which carers feel morally responsible), and that some of these factors help care providers and relatives to distinguish continuous sedation from euthanasia.

Consultation with specialist palliative care services in palliative sedation: considerations of Dutch physicians.

PURPOSE: Palliative sedation is considered a normal medical practice by the Royal Dutch Medical Association. Therefore, consultation of an expert is not considered mandatory. The European Association of Palliative Care (EAPC) framework for palliative sedation, however, is more stringent: it considers the use of palliative sedation without consulting an expert as injudicious and insists on input from a multi-professional palliative care team. This study investigates the considerations of Dutch physicians concerning consultation about palliative sedation with specialist palliative care services. METHODS: Fifty-four physicians were interviewed on their most recent case of palliative sedation. RESULTS: Reasons to consult were a lack of expertise and the view that consultation was generally supportive. Reasons not to consult were sufficient expertise, the view that palliative sedation is a normal medical procedure, time pressure, fear of disagreement with the service and regarding consultation as having little added value. Arguments in favour of mandatory consultation were that many physicians lack expertise and that palliative sedation is an exceptional intervention. Arguments against mandatory consultation were practical obstacles that may preclude fulfilling such an obligation (i.e. lack of time), palliative sedation being a standard medical procedure, corroding a physician's responsibility and deterring physicians from applying palliative sedation. CONCLUSION: Consultation about palliative sedation with specialist palliative care services is regarded as supportive and helpful when physicians lack expertise. However, Dutch physicians have both practical and theoretical objections against mandatory consultation. Based on the findings in this study, there seems to be little support among Dutch physicians for the EAPC recommendations on obligatory consultation.

Physicians' experiences and perspectives regarding the use of continuous sedation until death for cancer patients in the context of psychological and existential suffering at the end of life.

OBJECTIVE: The use of continuous sedation until death for terminally ill cancer patients with unbearable and untreatable psychological and existential suffering remains controversial, and little in-depth insight exists into the circumstances in which physicians resort to it. METHODS: Our study was conducted in Belgium, the Netherlands, and the UK in hospitals, PCUs/hospices, and at home. We held interviews with 35 physicians most involved in the care of cancer patients who had psychological and existential suffering and had been continuously sedated until death. RESULTS: In the studied countries, three groups of patients were distinguished regarding the origin of their psychological and existential suffering. The first group had preexisting psychological problems before they became ill, the second developed psychological and existential suffering during their disease trajectory, and the third presented psychological symptoms that were characteristic of their disease. Before they resorted to the use of sedation, physicians reported that they had considered an array of pharmacological and psychological interventions that were ineffective or inappropriate to relieve this suffering. Necessary conditions for using sedation in this context were for most physicians the presence of refractory symptoms, a short life expectancy, and an explicit patient request for sedation. CONCLUSIONS: Physicians in our study used continuous sedation until death in the context of psychological and existential suffering after considering several pharmacological and psychological interventions. Further research and debate are needed on how and by whom this suffering at the end of life should be best treated, taking into account patients' individual preferences.

Palliative sedation: not just normal medical practice. Ethical reflections on the Royal Dutch Medical Association's guideline on palliative sedation.

The main premise of the Royal Dutch Medical Association's (RDMA) guideline on palliative sedation is that palliative sedation, contrary to euthanasia, is normal medical practice. Although we do not deny the ethical distinctions between euthanasia and palliative sedation, we will critically analyse the guideline's argumentation strategy with which euthanasia is demarcated from palliative sedation. First, we will analyse the guideline's main premise, which entails that palliative sedation is normal medical treatment. After this, we will critically discuss three crucial propositions of the guideline that are used to support this premise: (1) the patient's life expectancy should not exceed 2 weeks; (2) the aim of the physician should be to relieve suffering and (3) expert consultation is optional. We will conclude that, if inherent problematic aspects of palliative sedation are taken seriously, palliative sedation is less normal than it is now depicted in the guideline.

A case study of haemoglobinopathy screening in the Netherlands: witnessing the past, lessons for the future.

OBJECTIVES: In 2007 neonatal screening (NNS) was expanded to include screening for sickle cell disease (SCD) and beta-thalassaemia. Up until that year no formal recommendations for haemoglobinopathy (carrier) screening existed in the Netherlands. Although it has been subject to debate in the past, preconceptional and prenatal haemoglobinopathy carrier screening are not part of routine healthcare in the Netherlands. This study aimed to explore the decision-making process of the past: why was the introduction of a screening programme for haemoglobinopathy considered to be untimely, and did ethnicity play a role given the history in other countries surrounding the introduction of haemoglobinopathy screening? DESIGN: A witness seminar was organised, inviting key figures to discuss the decision-making process concerning haemoglobinopathy screening in the Netherlands, thereby adding new perspectives on past events. The transcript was content-analysed. RESULTS: The subject of haemoglobinopathy screening first appeared in the 1970s. As opposed to a long history of neglect of African-American health in the United States, the heritage of the Second World War influenced the decision-making process in the Netherlands. As a consequence, registration of ethnicity surfaced as an impeding factor. However, overall, official Dutch screening policy was restrained regarding reproductive issues caused by fear of eugenics. In the 1990s haemoglobinopathy screening was found to be 'not opportune' due to low prevalence, lack of knowledge and fear of stigmatisation. Currently the registration of ethnicity remains on the political agenda, but still proves to be a sensitive subject. DISCUSSION: Carrier screening in general never appeared high on the policy agenda. Registration of ethnicity remains sensitive caused by the current political climate. Complexities related to carrier screening are a challenge in Dutch healthcare. Whether carrier screening will be considered a valuable complementary strategy in the Netherlands, depends partly on participation of representatives of high-risk groups in policy making.

Informing family members about a hereditary predisposition to cancer: attitudes and practices among clinical geneticists.

If a hereditary predisposition to colorectal cancer or breast cancer is diagnosed, most guidelines state that clinical geneticists should request index patients to inform their at-risk relatives about the existence of this condition in their family, thus enabling them to consider presymptomatic genetic testing. Those identified as mutation carriers can undertake strategies to reduce their risk of developing the disease or to facilitate early diagnosis. This procedure of informing relatives through the index patient has been criticised, as it results in relatively few requests for genetic testing, conceivably because a certain number of relatives remain uninformed. This pilot study explored attitudes toward informing family members and relevant practices among clinical geneticists. In general, clinical geneticists consider it to be in the interests of family members to be informed and acknowledge that this goal is not accomplished by current procedures. The reasons given for maintaining present practices despite this include clinical 'mores', uncertainty about the legal right of doctors to inform family members themselves, and, importantly, a lack of resources. We discuss these reasons from an ethical point of view and conclude that they are partly uninformed and inconsistent. If informing relatives is considered to be in their best interests, clinical geneticists should consider informing relatives themselves. In the common situation in which index patients do not object to informing relatives, no legal obstacles prevent geneticists from doing so. An evaluation of these findings among professionals may lead to a more active approach in clinical practice.

Relieving suffering at the end of life: practitioners' perspectives on palliative sedation from three European countries.

This paper reports findings from visits to palliative care settings and research units in the UK, Belgium and the Netherlands. The aim was to learn about clinicians' (both nurses and doctors) and academic researchers' understandings and experiences of palliative sedation for managing suffering at the end of life, and their views regarding its clinical, ethical and social implications. The project was linked to two larger studies of technologies used in palliative care. Eleven doctors, 14 nurses and 10 researchers took part in informal interviews. Relevant reports and papers from the academic, clinical and popular press were also collected from the three countries. The study took place in a context in which attention has been drawn towards palliative sedation by the legalisation of euthanasia in the Netherlands and Belgium, and by the re-examination of the legal position on assisted dying in the UK. In this context, palliative sedation has been posited by some as an alternative path of action. We report respondents' views under four headings: understanding and responding to suffering; the relationship between palliative sedation and euthanasia; palliative sedation and artificial hydration; and risks and uncertainties in the clinician-patient/family relationship. We conclude that the three countries can learn from one another about the difficult issues involved in giving compassionate care to those who are suffering immediately before death. Future research should be directed at enabling dialogue between countries: this has already been shown to open the door to the development of improved palliative care and to enhance respect for the different values and histories in each.

Euthanasia and palliative care in The Netherlands: an analysis of the latest developments.

This article discusses the latest developments regarding euthanasia and palliative care in The Netherlands. On the one hand, a legally codified practice of euthanasia has been established. On the other hand, there has been a strong development of palliative care. The combination of these simultaneous processes seems to be rather unique. This contribution first focuses on these remarkable developments. Subsequently, the analysis concentrates on the question of how these new developments have influenced the ethical debate.