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

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

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

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

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

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

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

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

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

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

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

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

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

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

Individual responsibility, solidarity and differentiation in healthcare.

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

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

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

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

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

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

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

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

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

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

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

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

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

[Patients with unusual requests for extractions 1. professional standard versus patient's autonomy]. / Patiënten met ongewone extractiewensen 1. Professionele standaard versus autonomie van patiënten.

Assertive patients will, in the future, more readily appear with their own diagnosis. As a result, dentists will more often be confronted with sometimes rather unusual requests from patients. An extreme request from a patient is the removal of (all) teeth. The central issue in this article is how to deal with such a request. The conclusion is that the patient's autonomy is limited by the professional standards of the dentist and the patient's capacity to assess in a reasonable way what is in his own best interests.

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

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

Under what conditions do patients want to be informed about their risk of a complication? A vignette study.

BACKGROUND: Discussing treatment risks has become increasingly important in medical communication. Still, despite regulations, physicians must decide how much and what kind of information to present. OBJECTIVE: To investigate patients' preference for information about a small risk of a complication of colonoscopy, and whether medical and personal factors contribute to such preference. To propose a disclosure policy related to our results. DESIGN: Vignettes study. SETTING: Department of Gastroenterology, Academic Medical Centre, the Netherlands. PATIENTS: 810 consecutive colonoscopy patients. INTERVENTION: A home-sent questionnaire containing three vignettes. Vignettes varied in the indication for colonoscopy, complication severity and level of risk. Patients were invited to indicate their wish to be informed and the importance of such information. In addition, sociodemograhic, illness-related and psychological characteristics were assessed. MAIN OUTCOME MEASUREMENTS: Wish to be informed and importance of information. RESULTS: Of 810 questionnaires, 68% were returned. Patients generally wished to be informed about low-risk complications, regardless of the indication for colonoscopy or the severity of the complication. The level of risk did matter, though (OR = 2.48, SE = 0.28, p = 0.001). The information was considered less important if done for population screening purposes or diagnosis of colon cancer, if the complication was less severe (bleeding) and if the risk was smaller (0.01% and 0.1%). Patients' information preference was also related to age, mood and coping style. LIMITATIONS: Difficulty of vignettes. CONCLUSIONS: Patients generally wish to be informed about all possible risks. However, this might become uninformative. A stepwise approach is suggested.

Value judgements that matter to patients remain implicit in oncology guidelines: an observational study.

BACKGROUND: Clinical practice guidelines are often evidence-based. However, it is inevitable that there are value judgements in the practical recommendations contained in the guidelines. In order to see if patients are ultimately being supplied with sufficient information to help them make treatment decision, we determined 1) which value judgements influence the process of developing guidelines for palliative chemotherapy, and 2) whether these value judgements were made explicit in the final guideline report. METHODS: We studied the development process of six Dutch oncology guidelines in which palliative chemotherapy plays a substantial role. We observed the guideline development groups (GDGs), conducted semi-structured interviews with individual GDG members (including the chairs), and analysed the minutes of GDG meetings and subsequent versions of the guidelines. A value judgement was defined as a statement about the value of a patient outcome with regard to palliative chemotherapy. RESULTS: We identified the following value judgements in the process of guideline development: 1) consensus on what should be considered as valuable minimum patient outcomes, 2) preference for tailored treatment in situations where there is no evidence of treatment effect, 3) preference for 'doing something' even when there is sufficient evidence of no effect, and 4) the patient outcome of 'prolonging life'. These value judgements, however, were not reported in the final guideline. CONCLUSION: At least the last two value judgements mentioned are relevant for patients with incurable metastatic cancer in making decisions whether to undergo chemotherapy and what kind. Value judgements should be made explicit in guidelines, so that clinicians can transparently discuss treatment options with individual patients.

[Potential parenthood for the mentally handicapped; the role of the physician]. / Potentieel ouderschap voor mensen met een verstandelijke beperking; de rol van de arts.

* What responsibilities and options do physicians have regarding contraception, pregnancy and parenthood in people with mental disability? The issue encompasses the assessment of parenting capability and mental competence, and options for supporting responsible parenthood and preventing irresponsible parenthood. * Parenting capability is a combined trait of both parents. Family and friends may support that capability. * According to a recent description, parenthood is 'good enough' when there are no indications for neglect or abuse, and when there is no involvement of the Child Care and Protection Board. * Mental competence regarding pregnancy signifies that the person involved can understand and weigh the consequences of pregnancy for themselves and others, including the future child. * If parenthood is likely to be irresponsible and the person is sexually active and refuses contraception, a physician has three options: persuasion, pressure or coercion. The latter is legally allowed only in cases of mental incompetence. * People with mental disability will continue to have children, regardless of whether their environment considers it responsible. Although informal caregivers will provide the primary support in this situation, adequate professional support is desirable.

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

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