Moral sensitivity revisited.

Nurses find themselves in a unique position - between patient and physicians, and in close proximity to the patient. Moral sensitivity can help nurses to cope with the daily turmoil of demands and opinions while delivering care in concordance with the value system of the patient. This article aims to reconsider the concept of moral sensitivity by discussing the function of emotions in morality. We turn to the ideas of historic and contemporary authors on the function of emotions in morality to expand our understanding of moral sensitivity. Ancient philosophers and contemporary psychologists uphold different strategies on the orientation of morality being (a) personal growth or (b) community living, and the primordial function of (c) reason and (d) emotions in the creation of judgements about good and bad. The theoretical discussion on the function of emotions in morality shows that by focusing on reason alone, one leaves out an essential part of morality. The concept of moral sensitivity should (1) include an initial judgment of good and bad based on emotions, (2) hold the ability to reflect on the initial judgement and the associated emotions, (3) include the ability to understand other stakeholders' perspectives based on the ideal-types and (4) include a personal decision on the right course of action.

Moral dilemmas and conflicts concerning patients in a vegetative state/unresponsive wakefulness syndrome: shared or non-shared decision making? A qualitative study of the professional perspective in two moral case deliberations.

BACKGROUND: Patients in a vegetative state/ unresponsive wakefulness syndrome (VS/UWS) pose ethical dilemmas to those involved. Many conflicts occur between professionals and families of these patients. In the Netherlands physicians are supposed to withdraw life sustaining treatment once recovery is not to be expected. Yet these patients have shown to survive sometimes for decades. The role of the families is thought to be important. The aim of this study was to make an inventory of the professional perspective on conflicts in long-term care of patients in VS/UWS. METHODS: A qualitative study of transcripts on 2 Moral Deliberations (MD's) in 2 cases of patients in VS/UWS in long-term care facilities. RESULTS: Six themes emerged: 1) Vision on VS/UWS; 2) Treatment and care plan; 3) Impact on relationships; 4) Feelings/attitude; 5) Communication; 6) Organizational aspects. These themes are related to professionals and to what families had expressed to the professionals. We found conflicts as well as contradictory feelings and thoughts to be a general feature in 4 of these themes, both in professionals and families. Conflicts were found in several actors: within families concerning all 6 themes, in nurse teams concerning the theme treatment and care plan, and between physicians concerning all 6 themes. CONCLUSIONS: Different visions, different expectations and hope on recovery, deviating goals and contradictory feelings/thoughts in families and professionals can lead to conflicts over a patient with VS/UWS. Key factors to prevent or solve such conflicts are a carefully established diagnosis, clarity upon visions, uniformity in treatment goals and plans, an open and empathic communication, expertise and understanding the importance of contradictory feelings/thoughts. Management should bridge conflicts and support their staff, by developing expertise, by creating stability and by facilitating medical ethical discourses. Shared compassion for the patient might be a key to gain trust and bridge the differences from non-shared to shared decision making.

Perspectives of patients, close relatives, nurses, and physicians on end-of-life medication management.

ABSTRACTObjective:Our aim was to gain insight into the perspectives of patients, close relatives, nurses, and physicians on medication management for patients with a life expectancy of less than 3 months. METHOD: We conducted an empirical multicenter study with a qualitative approach, including in-depth interviews with patients, relatives, nurses, specialists, and general practitioners (GPs). We used the constant comparative method and ATLAS.ti (v. 7.1) software for our analysis. RESULTS: Saturation occurred after 18 patient cases (76 interviews). Some 5 themes covering 18 categories were identified: (1) priorities in end-of-life care, such as symptom management and maintaining hope; (2) appropriate medication use, with attention to unnecessary medication and deprescription barriers; (3) roles in decision making, including physicians in the lead, relatives' advocacy, and pharmacists as suppliers; (4) organization and communication (e.g., transparency of tasks and end-of-life conversations); and (5) prerequisites about professional competence, accessibility and quality of medical records, and financial awareness. Patients, relatives, nurses, specialists, and GPs varied in their opinions about these themes. SIGNIFICANCE OF RESULTS: This study adds to our in-depth understanding of the complex practice of end-of-life medication management. It provides knowledge about the diversity of the perspectives of patients, close relatives, nurses, and physicians regarding beliefs, attitudes, knowledge, skills, behavior, work setting, the health system, and cultural factors related to the matter. Our results might help to draw an interdisciplinary end-of-life medication management guide aimed at stimulating a multidisciplinary and patient-centered pharmacotherapeutic care approach.

Assumptions and moral understanding of the wish to hasten death: a philosophical review of qualitative studies.

It is not uncommon for patients with advanced disease to express a wish to hasten death (WTHD). Qualitative studies of the WTHD have found that such a wish may have different meanings, none of which can be understood outside of the patient's personal and sociocultural background, or which necessarily imply taking concrete steps to ending one's life. The starting point for the present study was a previous systematic review of qualitative studies of the WTHD in advanced patients. Here we analyse in greater detail the statements made by patients included in that review in order to examine their moral understandings and representations of illness, the dying process and death. We identify and discuss four classes of assumptions: (1) assumptions related to patients' moral understandings in terms of dignity, autonomy and authenticity; (2) assumptions related to social interactions; (3) assumptions related to the value of life; and (4) assumptions related to medicalisation as an overarching context within which the WTHD is expressed. Our analysis shows how a philosophical perspective can add to an understanding of the WTHD by taking into account cultural and anthropological aspects of the phenomenon. We conclude that the knowledge gained through exploring patients' experience and moral understandings in the end-of-life context may serve as the basis for care plans and interventions that can help them experience their final days as a meaningful period of life, restoring some sense of personal dignity in those patients who feel this has been lost.

Spiritual Care in the ICU: Perspectives of Dutch Intensivists, ICU Nurses, and Spiritual Caregivers.

Since there are no scientific data available about the role of spiritual care (SC) in Dutch ICUs, the goal of this quantitative study was twofold: first, to map the role of SC as a part of daily adult ICU care in The Netherlands from the perspective of intensivists, ICU nurses, and spiritual caregivers and second, to identify similarities and differences among these three perspectives. This study is the quantitative part of a mixed methods approach. To conduct empirical quantitative cohort research, separate digital questionnaires were sent to three different participant groups in Dutch ICUs, namely intensivists, ICU nurses, and spiritual caregivers working in academic and general hospitals and one specialist oncology hospital. Overall, 487 participants of 85 hospitals (99 intensivists, 290 ICU nurses, and 98 spiritual caregivers) responded. The majority of all respondents (>70%) considered the positive effects of SC provision to patients and relatives: contribution to mental well-being, processing and channeling of emotions, and increased patient and family satisfaction. The three disciplines diverged in their perceptions of how SC is currently evolving in terms of information, assessment, and provision. Nationwide, SC is not implemented in daily ICU care. The majority of respondents, however, attached great importance to interdisciplinary collaboration. In their view SC contributes positively to the well-being of patients and relatives in the ICU. Further qualitative research into how patients and relatives experience SC in the ICU is required in order to implement and standardize SC as a scientifically based integral part of daily ICU care.

Effectiveness of supporting intensive care units on implementing the guideline 'End-of-life care in the intensive care unit, nursing care': a cluster randomized controlled trial.

AIM: The aim of this study was to examine the effectiveness of supporting intensive care units on implementing the guidelines. BACKGROUND: Quality of care can be achieved through evidence-based practice. Guidelines can facilitate evidence-based practice, such as the guidelines 'End-of-life care in the intensive care unit, nursing care'. Before intensive care nurses are able to use these guidelines, they needs to be implemented in clinical practice. Implementation is a complex process and may need support. DESIGN: Cluster randomized controlled trial. METHODS: Intensive care nurses of eight intensive care units in the intervention group followed a supportive programme that educated them on implementation, strategies, goals, project management and leadership. The intervention group focused on a stepwise approach to implement the guidelines. The control group (n = 5) implemented the guidelines independently or used the standard implementation plan supplementary to the guideline. The effectiveness of the programme was measured using questionnaires for nurses, interviews with nurses and a questionnaire for family of deceased patients, in the period from December 2014-December 2015. RESULTS: Overall, an increase in adherence to the guidelines was found in both groups. Overall, use of the guidelines in the intervention group was higher, but on some aspects the control group showed a higher score. Care for the patient and the overall nursing care scored significantly higher according to family in the intervention group. CONCLUSION: The increase in adherence to the guidelines and the significantly higher satisfaction of family in the intervention group indicate that the supportive programme had a more positive effect.

The role of ICU nurses in the spiritual aspects of end-of-life care in the ICU: an explorative study.

AIM: The aim of this study was to examine the role and responsibilities of intensive care unit (ICU) nurses regarding the spiritual aspects of end-of-life care in the ICU, from the chaplains' perspectives. METHOD: An explorative study including inductive thematic analysis was used. Two focus group interviews with in total eleven chaplains working in several Dutch ICUs were performed. RESULTS: The focus group interviews resulted in five themes: (i) awareness of ICU nurses, (ii) communication, (iii) nursing interventions, (iv) multidisciplinary care and (v) education. In total, twenty recommendations were formulated. CONCLUSIONS: This explorative study provides an overview of the perspectives of chaplains about the role of ICU nurses during end-of-life care, specified to spiritual care. Chaplains mentioned different roles, responsibilities and competences which are needed for ICU nurses to give spiritual care. These roles, responsibilities and competences included giving spiritual care to patients and families as standard care. Chaplains agreed that ICU nurses should start and maintain a dialogue with patient and families, but that it is also important to be aware of one's own spiritual background. However, education about spiritual care is needed to establish this. It could be recommended to educate ICU nurses during their ICU training or retraining about spiritual care and reflection.

Teleconsultation for integrated palliative care at home: A qualitative study.

BACKGROUND: Interprofessional consultation contributes to symptom control for home-based palliative care patients and improves advance care planning. Distance and travel time, however, complicate the integration of primary care and specialist palliative care. Expert online audiovisual teleconsultations could be a method for integrating palliative care services. AIM: This study aims to describe (1) whether and how teleconsultation supports the integration of primary care, specialist palliative care, and patient perspectives and services and (2) how patients and (in)formal caregivers experience collaboration in a teleconsultation approach. DESIGN: This work consists of a qualitative study that utilizes long-term direct observations and in-depth interviews. SETTING/PARTICIPANTS: A total of 18 home-based palliative care patients (16 with cancer, 2 with chronic obstructive pulmonary disease; age range 24-85 years old), 12 hospital-based specialist palliative care team clinicians, and 17 primary care physicians. RESULTS: Analysis showed that the introduction of specialist palliative care team-patient teleconsultation led to collaboration between primary care physicians and specialist palliative care team clinicians in all 18 cases. In 17/18 cases, interprofessional contact was restricted to backstage work after teleconsultation. In one deviant case, both the patient and the professionals were simultaneously connected through teleconsultation. Two themes characterized integrated palliative care at home as a consequence of teleconsultation: (1) professionals defining responsibility and (2) building interprofessional rapport. CONCLUSION: Specialist palliative care team teleconsultation with home-based patients leads to collaboration between primary care physicians and hospital-based palliative care specialists. Due to cultural reasons, most collaboration was of a multidisciplinary character, strongly relying on organized backstage work. Interdisciplinary teleconsultations with real-time contact between patient and both professionals were less common but stimulated patient-centered care dialogues.

Request for organ donation without donor registration: a qualitative study of the perspectives of bereaved relatives.

BACKGROUND: In the Netherlands, consent from relatives is obligatory for post mortal donation. This study explored the perspectives of relatives regarding the request for consent for donation in cases without donor registration. METHODS: A content analysis of narratives of 24 bereaved relatives (14 in-depth interviews and one letter) of unregistered, eligible, brain-dead donors was performed. RESULTS: Relatives of unregistered, brain-dead patients usually refuse consent for donation, even if they harbour pro-donation attitudes themselves, or knew that the deceased favoured organ donation. Half of those who refused consent for donation mentioned afterwards that it could have been an option. The decision not to consent to donation is attributed to contextual factors, such as feeling overwhelmed by the notification of death immediately followed by the request; not being accustomed to speaking about death; inadequate support from other relatives or healthcare professionals, and lengthy procedures. CONCLUSION: Healthcare professionals could provide better support to relatives prior to donation requests, address their informational needs and adapt their message to individual circumstances. It is anticipated that the number of consenting families could be enlarged by examining the experience of decoupling and offering the possibility of consent for donation after circulatory death if families refuse consent for donation after brain-death.

The nursing role during end-of-life care in the intensive care unit related to the interaction between patient, family and professional: an integrative review.

AIM: The aim of this study was to explore how intensive care unit (ICU) nurses describe their role during End-of-Life Care (EOLC) in the ICU, related to the interaction between patient, family and professionals (care triad). METHOD: Three electronic databases, PubMed, CINAHL and EMBASE, and reference lists of included studies were searched for studies in English, Dutch or German between January 2002 and August 2015. Studies were included if they presented data about EOLC in the adult ICU, and the role of ICU nurses around EOLC. Quantitative and qualitative studies and opinion articles were extracted. Inductive content analysis was carried out to analyse and categorise the data. RESULTS: Twenty studies were included. Four categories emerged: care for the ICU patient, care for the family, environmental aspects of EOLC and organisational aspects of EOLC. Regarding the care triad, a gap exists between theoretical models and the actual care provided by ICU nurses during EOLC. The relational aspect of care, like aimed with care triad, is absent. CONCLUSION: The literature clearly indicates that the role of ICU nurses concerns care for the patient, family and environment. It described which care should be given, but it remains unclear how care should be given (attitude). Therefore, it is difficult for ICU nurses to provide this care. Further, it seems that care provided to family mainly consists of giving advice on how to care for the patient; care for family members themselves was only mentioned in a few studies. Therefore, it seems that family does not always receive adequate care yet, which may be helpful in preventing problems like depression, anxiety or post-traumatic stress disorder. It can be concluded that it is important for ICU nurses to be aware of the existing relationships; however, comparing the literature, care triad does not appear to be reached.

Decision making on organ donation: the dilemmas of relatives of potential brain dead donors.

BACKGROUND: This article is part of a study to gain insight into the decision-making process by looking at the views of the relatives of potential brain dead donors. Alongside a literature review, focus interviews were held with healthcare professionals about their role in the request and decision-making process when post-mortal donation is at stake. This article describes the perspectives of the relatives. METHODS: A content-analysis of 22 semi-structured in-depth interviews with relatives involved in an organ donation decision. RESULTS: Three themes were identified: 'conditions', 'ethical considerations' and 'look back'. Conditions were: 'sense of urgency', 'incompetence to decide' and 'agreement between relatives'. Ethical considerations result in a dilemma for non-donor families: aiding people or protecting the deceased's body, especially when they do not know his/her preference. Donor families respect the deceased's last will, generally confirmed in the National Donor Register. Looking back, the majority of non-donor families resolved their dilemma by justifying their decision with external arguments (lack of time, information etc.). Some non-donor families would like to be supported during decision-making. DISCUSSION: The discrepancy between general willingness to donate and the actual refusal of a donation request can be explained by multiple factors, with a cumulative effect. Firstly, half of the participants (most non-donor families) stated that they felt that they were not competent to decide in such a crisis and they seem to struggle with utilitarian considerations against their wish to protect the body. Secondly, non-donor families refused telling that they did not know the deceased's wishes or contesting posthumous autonomy of the eligible. Thirdly, the findings emphasise the importance of Donor Registration, because it seems to prevent dilemmas in decision-making, at least for donor families. CONCLUSION: Discrepancies between willingness to consent to donate and refusal at the bedside can be attributed to an unresolved dilemma: aiding people or protect the body of the deceased. Non-donor families felt incompetent to decide. They refused consent for donation, since their deceased had not given any directive. When ethical considerations do not lead to an unambiguous answer, situational factors were pivotal. Relatives of unregistered eligible donors are more prone to unstable decisions. To overcome ambivalence, coaching during decision-making is worth investigation.

Intensive care staff, the donation request and relatives' satisfaction with the decision: a focus group study.

BACKGROUND: Effectiveness of the donation request is generally measured by consent rates, rather than by relatives' satisfaction with their decision. Our aim was to elicit Dutch ICU staffs' views and experiences with the donation request, to investigate their awareness of (dis)satisfaction with donation decisions by relatives, specifically in the case of refusal, and to collect advice that may leave more relatives satisfied with their decision. METHODS: Five focus groups with a total of 32 participants (IC physicians, IC nurses and transplant coordinators) from five university hospitals in the Netherlands. Transcripts were examined using standard qualitative methods. RESULTS: Four themes (donation request perceived by ICU staff from the perspective of relatives; donation request perceived by ICU staff from their own perspective; aftercare; donation in society) divided into 14 categories were identified. According to ICU staff, relatives mentioned their own values more frequently than values of the potential donor as important for the decision. ICU staff observed this imbalance, but reacted empathically to the relatives' point of view. ICU staff rarely suggested reconsideration of refusal and did not ask relatives for arguments. ICU staff did not always feel comfortable with a request in the delicate context of brain death. Sometimes the interests of patient, relatives and those on the waiting list were irreconcilable. ICU staff were mostly unaware of relatives' regret following their decisions. Aftercare did not provide this type of information. Donation request by IC physicians was influenced by the way organ donation has been regulated in society (law, donor register, education, media). CONCLUSIONS: Our findings lead to the hypothesis that giving relatives more time and inviting them to reconsider their initial refusal will lead to a more stable decision and possibly more consent.

Transmural palliative care by means of teleconsultation: a window of opportunities and new restrictions.

BACKGROUND: Audio-visual teleconsultation is expected to help home-based palliative patients, hospital-based palliative care professionals, and family physicians to jointly design better, pro-active care. Consensual knowledge of the possibilities and limitations of teleconsultation in transmural palliative care is, however, largely lacking.This paper aims at describing elements of both the physical workplace and the cultural-social context of the palliative care practice, which are imperative for the use of teleconsultation technologies. METHODS: A semi-structured expert meeting and qualitative, open interviews were deployed to explore professionals' assumptions and wishes, which are considered to contain latent presumptions about the practice's physical workplace and latent elements of the cultural-social context, regarding (1) the mediating potential of audio-visual teleconsultation, (2) how the audio-visual teleconsultations will affect medical practice, and (3) the design and usage of the teleconsultation technology. We used a qualitative analysis to investigate how palliative care professionals interpret the teleconsultation package in preparation. The analysis entailed open and axial coding techniques developed in a grounded theory approach. RESULTS: Respondents assume: 1. teleconsultation will hinder physical proximity, thereby compromising anamnesis and diagnosis of new or acutely ill patients as well as "real contact" with the person behind the patient; 2. teleconsultation will help patients becoming more of a pivotal figure in their own care trajectory; 3. they can use teleconsultation to keep a finger on the pulse; 4. teleconsultations have a healing effect of their own due to offered time and digital attention; 5. teleconsultation to open up an additional "gray" network outside the hierarchical structures of the established chain of transmural palliative care. This network could cause bypassing of caregivers and uncertainty about responsibilities; 6. teleconsultations lead to an extended flow of information which helps palliative care professionals to check the stories of patients and medical specialists. CONCLUSIONS: Professionals assume teleconsultation co-defines a new patient-professional relationship by extending hospital-based caregivers' perceptions of as well as attention for their patients. At the cost, however, of clinical and personal connectedness. Secondly, a hermeneutics is needed to carefully interpret teleconsultation images. Thirdly, teleconsultations transform caregiving cultures as formerly separated care domains collide, demanding a redefinition of roles and responsibilities.

Spiritual Care in the Intensive Care Unit: Experiences of Dutch Intensive Care Unit Patients and Relatives.

BACKGROUND/OBJECTIVE: To gain insight into both patients' and relatives' experiences with spiritual care (SC) in the intensive care unit (ICU). METHODS: Method used was qualitative interviewing. This was a thematic, topic-centered, biographical, and narrative approach, using semistructured interviews with thematic analysis. A purposive sampling method was used to select a sample of ICU patients and ICU patients' relatives. An interview guide facilitated individual, semistructured interviews. The interview data were recorded by means of note-taking and audio-recording. Verbatim transcripts were compiled for analysis and interpretation. RESULTS: All 12 participants-7 ICU patients and 5 family members of 5 other ICU patients-experienced ICU admission as an existential crisis. Participants would appreciate the signaling of their spiritual needs by ICU health care professionals (HCPs) at an early stage of ICU admission and subsequent SC provision by a spiritual caregiver. They regarded the spiritual caregiver as the preferred professional to address spiritual needs, navigate during their search for meaning and understanding, and provide SC training in signaling spiritual needs to ICU HCPs. DISCUSSION: Early detection of existential crisis signals with ICU patients and relatives contributes to the mapping of spiritual and religious needs. Spiritual care training of ICU HCPs in signaling spiritual needs by ICU patients and relatives is recommended. Effective SC contributes to creating room for processing emotions, spiritual well-being, and satisfaction with integrated SC as part of daily ICU care.

Women's views on the moral status of nature in the context of prenatal screening decisions.

Appeals to the moral authority of nature play an important role in ethical discussions about the acceptability of prenatal testing. While opponents consider testing a dangerous violation of the moral inviolable course of nature, defenders see testing as a new step in improving dominion over nature. In this study we explored the meaning of appeals to nature among pregnant women to whom a prenatal screening test was offered and the impact of these appeals on their choices regarding the acceptance of screening. Contrary to theoretical debates we found that appeals to the moral authority of nature do not prevent women from welcoming the possibilities of controlling the outcomes of pregnancy, neither do they provide prima facie justification for (not) intervening in the natural course of events. Both acceptors and decliners believed in an inherent morality in nature that must be respected. They welcome the possibility of knowing more about the health of the fetus and to make their own reproductive decisions. Concerns for the quality of their child's life and for their capacity to assure a good life for their family and disabled child appear to play a central role in the decision regarding the use of screening. Appeals to nature can be interpreted as an attempt to justify beliefs regarding suffering that must be avoided and the impact that family interests may have on the decision. These findings have significant implications for ethical guidance in debates about the acceptability and boundaries of control of offspring characteristics by prenatal testing.

Ethical issues at the interface of clinical care and research practice in pediatric oncology: a narrative review of parents' and physicians' experiences.

BACKGROUND: Pediatric oncology has a strong research culture. Most pediatric oncologists are investigators, involved in clinical care as well as research. As a result, a remarkable proportion of children with cancer enrolls in a trial during treatment. This paper discusses the ethical consequences of the unprecedented integration of research and care in pediatric oncology from the perspective of parents and physicians. METHODOLOGY: An empirical ethical approach, combining (1) a narrative review of (primarily) qualitative studies on parents' and physicians' experiences of the pediatric oncology research practice, and (2) comparison of these experiences with existing theoretical ethical concepts about (pediatric) research. The use of empirical evidence enriches these concepts by taking into account the peculiarities that ethical challenges pose in practice. RESULTS: Analysis of the 22 studies reviewed revealed that the integration of research and care has consequences for the informed consent process, the promotion of the child's best interests, and the role of the physician (doctor vs. scientist). True consent to research is difficult to achieve due to the complexity of research protocols, emotional stress and parents' dependency on their child's physician. Parents' role is to promote their child's best interests, also when they are asked to consider enrolling their child in a trial. Parents are almost never in equipoise on trial participation, which leaves them with the agonizing situation of wanting to do what is best for their child, while being fearful of making the wrong decision. Furthermore, a therapeutic misconception endangers correct assessment of participation, making parents inaccurately attribute therapeutic intent to research procedures. Physicians prefer the perspective of a therapist over a researcher. Consequently they may truly believe that in the research setting they promote the child's best interests, which maintains the existence of a therapeutic misconception between them and parents. CONCLUSION: Due to the integration of research and care, their different ethical perspectives become intertwined in the daily practice of pediatric oncology. Increasing awareness of what this means for the communication between parents and physicians is essential. Future research should focus on efforts that overcome the problems that the synchronicity of research and care evokes.

Pediatric oncologists' attitudes towards involving adolescents in decision-making concerning research participation.

BACKGROUND: Various regulations and guidelines stipulate the importance of involving adolescents in decision-making concerning research participation. Several studies have shown that in the context of pediatric oncology this involvement is difficult to achieve due to emotional stress, the complexity of research protocols and limited time. Still, up to 80% of adolescents with cancer enter onto a trial during their illness. The aim of this study was to determine clinicians' views and attitudes towards enrolling adolescents in research, considering the difficulties surrounding their involvement in decision-making. METHODS: A qualitative multicenter study was performed, using in-depth semi-structured interviews on the informed consent process with 15 pediatric hemato-oncologists. RESULTS: Four central themes emerged that characterize clinicians' attitudes towards involving adolescents in the decision-making process: (1) clinicians regard most adolescents as not capable of participating meaningfully in discussions regarding research; (2) clinicians do not always provide adolescents with all information; (3) proxy consent from parents is obtained and is deemed sufficient; (4) clinician-investigator integrity: clinicians judge research protocols as not being harmful and even in the best interest of the adolescent. CONCLUSIONS: Clinicians justify not involving adolescents in research discussions by referring to best interest arguments (adolescents' incompetence, proxy consent, and investigator integrity), although this is not in line with legal regulations and ethical guidelines.