Search

The implantable cardioverter defibrillator (ICD) is effective in terminating life-threatening arrhythmias. However, in the last phase of life, ICD shocks may no longer be appropriate. Guidelines recommend timely discussion with the patient regarding deactivation of the shock function of the ICD. However, research shows that such conversations are scarce, and some patients experience avoidable and distressful shocks in the final days of life. Barriers such as physicians’ lack of time, difficulties in finding the right time to discuss ICD deactivation, patients’ reluctance to discuss the topic, and the fragmentation of care, which obscures responsibilities, prevent healthcare professionals from discussing this topic with the patient. In this point-of-view article, we argue that healthcare professionals who are involved in the care for ICD patients should be better educated on how to communicate with patients about ICD deactivation and the end of life. Optimal communication is needed to reduce the number of patients experiencing inappropriate and painful shocks in the terminal stage of their lives.

Objectives Self-management of patients with advanced cancer is challenging. Although healthcare professionals may play a crucial role in supporting these patients, scant scientific attention has been paid to their perspectives. Therefore, we examined healthcare professionals’ views on self-management and self-management support in this population. Methods We conducted qualitative interviews with 27 purposively sampled medical specialists (n = 6), nurse specialists (n = 6), general practitioners (n = 8) and homecare/ hospice nurses (n = 7) in the Netherlands. Transcripts were analysed using thematic analysis. Results Healthcare professionals experienced self-management of patients with advanced cancer to be diverse, dynamic and challenging. They adopted instructive, collaborative and advisory roles in self-management support for this population. Whereas some professionals preferred or inclined towards one role, others indicated to switch roles, depending on the situation. Conclusions Just like patients with advanced cancer, healthcare professionals differ in their views and approaches regarding self-management and self-management support in this population. Therefore, instructive, collaborative and advisory self-management support roles will all be useful under certain circumstances. Practice implications Healthcare professionals can support self-management by being aware of their own views and communicating these clearly to their patients and colleagues. Education in self-management support should include self-reflection skills and discuss the relation between self-management and professional care.

Purpose Patients’ readiness for advance care planning (ACP) is often considered a prerequisite for starting ACP conversations. Healthcare professionals’ uncertainty about patients’ readiness hampers the uptake of ACP in clinical practice. This study aims To determine how patients’ readiness is expressed and develops throughout an ACP conversation. Methods A qualitative sub-study into the ACTION ACP conversations collected as part of the international Phase III multicenter cluster-randomized clinical trial. A purposeful sample was taken of ACP conversations of patients with advanced lung or colorectal cancer who participated in the ACTION study between May 2015 and December 2018 (n = 15). A content analysis of the ACP conversations was conducted. Results All patients (n = 15) expressed both signs of not being ready and of being ready. Signs of being ready included anticipating possible future scenarios or demonstrating an understanding of one’s disease. Signs of not being ready included limiting one’s perspective to the here and now or indicating a preference not to talk about an ACP topic. Signs of not being ready occurred more often when future-oriented topics were discussed. Despite showing signs of not being ready, patients were able to continue the conversation when a new topic was introduced. Conclusion Healthcare professionals should be aware that patients do not have to be ready for all ACP topics to be able to participate in an ACP conversation. They should be sensitive to signs of not being ready and develop the ability to adapt the conversation accordingly.

Background Patients and healthcare professionals describe patients’ readiness for advance care planning (ACP) as an indicator for whether or not to start ACP conversations. Nevertheless, it is unclear how readiness manifests and develops throughout an ACP conversation. This study explores patients’ readiness during an ACP conversation. Methods A qualitative study using content analysis of structured ACP conversations between a trained facilitator, a patient with advanced colorectal or lung cancer and a relative. Conversations were conducted in the Netherlands as part of the international ACTION trial. Analysis was supported by NVivo 11. Results Transcripts of thirteen ACP conversations were included. All patients expressed both signs of not being ready and being ready within one conversation. Signs of being ready included answering questions on a personal level or demonstrating a realistic understanding of one’s disease. Signs of not being ready included limiting one’s perspective to the here and now or indicating a preference not to talk about an ACP-related topic. Signs of not being ready were especially seen when future oriented topics such as ‘complications’ and ‘hope’ were discussed. Patients could more easily elaborate on less future orientated topics as ‘good life’ and ‘earlier experiences with illness’. Despite signs of not being ready patients were able to continue the conversation. Conclusion Patients do not have to be ready for all elements of ACP to be able to participate in an ACP conversation. Healthcare professionals should be aware of patients’ ability to alternate in readiness depending on the topic that is discussed.

Background Conversation guides support professionals to conduct ACP-conversations, yet insight in essential components is limited. This systematic review aims to evaluate the content, rationale and empirical evidence on the effect of ACP interventions based on conversation guides. Methods Medline, Embase, PsychINFO and CINAHL were searched from January 1, 1998 to February 23, 2018 to identify peer-reviewed articles describing or evaluating scripted ACP-conversation guides. A thematic analysis of the guides was performed. Data on intervention characteristics, underlying rationale and empirical evidence was extracted. Results Eighty-two articles reporting on thirty-four unique interventions met the inclusion criteria. Analysis of the conversation guides revealed a framework for ACP-conversations consisting of four phases: preparation, initiation, exploration and action. Exploration of patient’s perspectives on illness, living well, end-of-life (EOL) issues and decision making formed the core part of the guides. Their design was often expert-based, without an underlying theoretical background. Empirical evidence on the effect of the interventions was based on heterogeneous outcome measures. Dyad congruence and preference documentation rates increased among intervention subjects in most studies. The studies showed varying effects on knowledge of ACP, decisional conflict, quality of communication and preferences-concordant care. Qualitative research showed that participants appreciate the importance and benefits of ACP-conversations, yet perceive them as difficult and emotional. Conclusion ACP-conversation guides address a diversity of themes regarding illness, EOL and decision making, with a focus on the exploration of patient’s perspectives and preferences. Evidence on translation of explorative information into specific treatment preferences and consequences for care as provided is limited.

Background Systematic evaluation of health care use and costs is important to identify the impact of advance care planning (ACP) programs. Such evaluations are currently scarce in Europe. Methods Our study was performed in the context of the ACTION trial, a randomized controlled study to evaluate effects of the ACTION Respecting Choices (RC) ACP intervention in patients with advanced cancer in six European countries. We applied a healthcare perspective and identified hospital care use from hospital medical records for 1 year after study inclusion. Unit prices were calculated for all six countries separately. The unit price of the ‘Respecting Choices’ ACP intervention was determined with the micro-costing method, which is based on detailed assessments of all resources used. Results Most intervention patients had one ACP conversation, one third had two. The average length was 90 minutes (standard deviation 45 minutes). Unit costs were comparable between countries for most interventions, with the exception of cancer-specific treatment. Most patients received chemotherapy, with a minority receiving surgery. Preliminary analyses showed similar patterns of health care use in both ACP and control groups: numbers of diagnostic procedures such as scans and biopsies were comparable; mean (range) length of hospital stay was 9 days (0 - 63) and 8 days (0 – 75) in intervention and control patients, respectively. Conclusion Unit costs of health care interventions were remarkably comparable between countries. The ACTION RC ACP intervention, consisting of conversations by patiens, relatives, and facilitators, did not appear to affect hospital care use. Funding EU FP7.

Background To improve advance care planning and palliative care for severely ill homeless people, insight into current practice is required. Therefore, the present study aims to describe the characteristics of people who deceased after having been homeless, the care preferred and received at the end of life, and difficulties in medical decision-making at medical respite shelters. Methods We conducted a quantitative and qualitative retrospective record review at two Dutch medical respite shelters. Included were the medical and nursing records of 61 homeless clients who were known to be deceased between 2009 and 2016 and had resided in one of both shelters for at least one night in the three months before death. Results The large majority of patients had a combination of somatic (98%), psychiatric (85%) and substance use problems (93%). Discussions about imminent death were reported for 75% of the patients for whom it was recognized. Twenty-six percent of records provided information about patients’ preferred place of death, which mostly was the shelter. For 36% of patients, hospital admissions had been considered undesirable by their clinician(s). In the three months before death, 75% of patients had at least one such admission. Documented difficulties in medical decision-making mainly concerned impaired decisional capacity of patients, language barriers, and fragmentation and discontinuity of care. Conclusion At the end of life, homeless people suffer from multiple health-related problems that require specific expertise. They experience multiple, often undesired hospital admissions. This could be avoided by more comprehensive collaboration between psychosocial, medical, and palliative care.

Background Stability of patients’ treatment preferences has important implications for advance care planning, among which its timing. We therefore examined the stability of preferences and its predictors of patients with advanced cancer. Methods In this cohort, 104 patients with metastatic cancer and an oncologist estimated life-expectancy of ≤ six months participated in interviews following clinical visits in which patients’ recent scan results were discussed. Interviews were repeated in three monthly follow-ups. At baseline, patients’ age, education, sex, race, marital status, insurance status, and type of cancer were documented. At each assessment, patients reported their treatment preferences (i.e. trade-offs of life-prolonging versus comfort care), quality of life, and illness understanding. Results At baseline (n=104), 55 (53%) patients preferred life-prolonging care, 49 (47%) preferred comfort care. Patients were followed for one (n=104), two (n=74), or three months (n=44). Between baseline and month I, 84 patients (81%) had stable treatment preferences. During follow-up, preferences of 71 patients (68%) remained stable (equally divided between a consistent preference for life-prolonging and comfort care). Treatment preferences of 33 (32%) patients changed at least once during follow-up. Patients’ preferences at baseline strongly predicted preferences at month I (OR=17.8; CI=6.7–47.3; p Conclusion Two-thirds of patients with advanced cancer had stable preferences regarding life-prolonging versus comfort care. Changes of preferences were often unpredictable. Our findings suggest potential benefits of ongoing communication about preferences, including advance care planning.

Background Despite universal recognition of advance care planning’s (ACP) importance, collectivism spirit in Asia may impact its uptake. Aims To gain insight into health care professionals’ (HCP) knowledge of, attitude towards, and experience with ACP in Asia. Methods We systematically searched four electronic databases for quantitative and qualitative studies on ACP in East and South East Asian countries. Anticipating unfamiliarity with ACP, we operationalized ACP broadly, covering discussions about future medical care and documentation thereof. Results Among 3,358 identified studies, 41 were eligible; 36 applied quantitative and 5 applied qualitative design. Most studies were conducted in high-income countries: Japan (16), South Korea (13), Singapore (4), Hong Kong (4), and Taiwan (3). While twenty-nine studies addressed documentation of preferences, only six addressed ACP and end-of-life discussion respectively. Ten studies addressing knowledge indicated moderate awareness of ACP. Thirty studies on attitudes showed that although many HCPs considered ACP and involving patient and family in its process important, some found initiating ACP difficult. This hesitation was partly due to fear of conflicts with family members and the legal consequences. Twenty studies on experiences indicated that actual engagement of HCP in ACP is limited, too late, and mostly only involved family without patients. Conclusion Although being considered potentially important, ACP did not occur often. HCPs seem to be reluctant to engage in ACP. The role of family in ACP is crucial in Asia. However, evidence was highly heterogeneous and limited to a few high-income countries, which limits its generalizability to other Asian countries.

Background Advance Care Planning (ACP) may prepare relatives of frail older patients for future decision-making. Objective To investigate (1) how bereaved relatives of frail older patients experience ACP conversations and (2) whether ACP has an effect on relatives’ preparation for decision-making and on their levels of anxiety and depression. Design: Cluster randomised controlled trial. Setting: Residential care homes in the Netherlands. Subjects: Bereaved relatives of care home residents and community-dwelling frail older patients. Methods We randomised 16 residential care homes to either the intervention group, where participants (frail older patients) were offered facilitated ACP, or the control group (n=201), where they received ‘care as usual’. If participants died, we approached relatives for an interview. We asked relatives who had attended ACP conversations for their experience with ACP (open-ended questions). Furthermore, we compared relatives’ preparation levels for decision-making and levels of anxiety and depression (HADS) between groups. This trial was registered (NTR4454). Results We conducted interviews with 39/51 (76%) bereaved relatives (intervention group: n=20, control group: n=19). Relatives appreciated the ACP conversations. A few considered ACP redundant since they were already aware of the patient’s preferences. Nine of 10 relatives in the intervention group felt adequately prepared for decision-making as compared to five of 11 relatives in the control group (p=.03). Relatives’ levels of anxiety and depression did not differ significantly between groups. Conclusions In our study, bereaved relatives of frail older patients appreciated ACP. ACP positively affected preparedness for decision-making. It did not significantly affect levels of anxiety or depression.

Background Advance care planning (ACP) is increasingly implemented in oncology and beyond, but a definition of ACP and recommendations concerning its use are lacking. This hinders the development of ACP programmes and the evaluation of ACP’s effectiveness. Methods We used a formal Delphi consensus process to help develop a definition of ACP and provide recommendations for its application in healthcare, policy and research. Results Of the 109 experts (82 from Europe, 16 from North America, and 11 from Australia) who rated the ACP definitions and its 41 recommendations, agreement for each definition or recommendation was between 68–100%. ACP was defined as the ability to enable individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care providers, and to record and review these preferences if appropriate. Recommendations included the adaptation of ACP based on the readiness of the individual; targeting ACP content as the individual’s health condition worsens; and, using trained non-physician facilitators to support the ACP process. A list of outcome measures is also presented to enable the pooling and comparison of results of ACP studies. Conclusion This large international Delphi panel was able to come to a consensus on an ACP definition and recommendations. This represents an important first step in providing clarity with a view to further policy and research in this field. We believe that our recommendations can provide guidance for clinical practice, ACP policy, and research.

Background Advance Care Planning aims at improving alignment of care with patients’ preferences. This may affect costs of medical care. Aim To determine the costs of an Advance Care Planning programme and its effects on the costs of medical care and on concordance of care with patients’ preferences. Design/settings/participants In a cluster randomised trial, 16 residential care homes were randomly allocated to the intervention group, where frail, older participants were offered facilitated Advance Care Planning conversations or to the control group. We calculated variable costs of Advance Care Planning per participant including personnel and travel costs of facilitators. Furthermore, we assessed participants’ healthcare use during 12 months applying a broad perspective (including medical care, inpatient days in residential care homes, home care) and calculated costs of care per participant. Finally, we investigated whether treatment goals were in accordance with preferences. Analyses were conducted for 97 participants per group. Trial registration number: NTR4454. Results Average variable Advance Care Planning costs were €76 per participant. The average costs of medical care were not significantly different between the intervention and control group (€2360 vs €2235, respectively, p=0.36). Costs of inpatient days in residential care homes (€41,551 vs €46,533) and of home care (€14,091 vs €17,361) were not significantly different either. Concordance of care with preferences could not be assessed since treatment goals were often not recorded. Conclusions The costs of an Advance Care Planning programme were limited. Advance Care Planning did not significantly affect the costs of medical care for frail older adults.

Background Advance Care Planning (ACP) enables individuals together with their relatives and health care professionals to discover, discuss and document their values, preferences and goals for care. Objective To evaluate the involvement of pediatricians taking care of children with life-limiting conditions in ACP. Methods All pediatricians from six Dutch pediatric hospitals completed a survey about experiences with ACP in their most recent case of a deceased child. Results Of the 207 participating pediatricians (response 36%), 168 completed the questionnaire (81%), of which 86% described a case. Of these children, 53% died before the age of 5 years. ACP conversations always took place with parents, mostly about diagnosis, life expectancy, goals of care, fears and worries and code status. In 23%, ACP conversations occurred with children (age: range 2.2–17.3 years, median 11.5 years), discussing mostly joy of life, hope, diagnosis and fears and worries. 94% of pediatricians were satisfied with their conversations skills. The occurrence rate of ACP conversations was indicated as insufficient by 49%. Pediatricians stated in 60% that ACP conversations have to result in a documented code status. 37% said ACP conversations intend mainly to provide information to families. Reported barriers to ACP conversations were mostly parent-related, while facilitators concerned continuity of care and a multidisciplinary approach. Conclusion Pediatricians reported to have ACP conversations mainly with parents with a focus on medical issues. Insight in the perspective of the child is limited. Education on the holistic approach of ACP and on involvement of children in ACP is needed.

Background ACP-conversations in pediatrics seem to occur too late and infrequent. Standards to conduct ACP-conversations are lacking. This study describes the development of an evidence-based pediatric ACP-intervention. Methods The Medical Research Council framework for development and evaluation of complex interventions was used to structure the developmental process. The process included a systematic review, expert review, a survey among pediatricians and qualitative research among parents, adolescents and health care professionals (HCPs). Behavioral theories and theories of coping with bereavement and loss underpinned the intervention. Results ACP was seen as an ongoing communicative process, where children and their families work together with HCPs to discover, discuss and document values, preferences and goals of care. The intervention supports ACP by 1) educational materials, 2) an ACP conversation guide and 3) a training for HCPs. Educational materials prepare children and parents by clarifying the concept of ACP and providing preparation prompts to discover their values. The guide provides HCPs structures and wording to address the following identified ACP topics: the identity of the child, living with illness, the future, hope, fears and worries, preferences for daily life and goals of care. The training educates HCPs about the concept of ACP and coping with illness and loss and trains specific communication skills. The intervention includes a documentation format. Conclusion A pediatric ACP-intervention was designed targeted to the following needs: education about the concept of ACP, strategies to conduct ACP conversations and a documentation format. Our ongoing research will evaluate the feasibility of the intervention.

Background Previous studies showed that family carers (FCs) who engaged in formal ACP had fewer adverse outcomes in wellbeing compared with FCs who did not. The ACTION trial is the first multicentre randomized controlled trial of ACP in six European countries. This study will report on the effect of ACP on the wellbeing of bereaved FCs. Methods 451 questionnaires were sent to bereaved FCs 3 months after the patient participating in the trial had died; 163 were returned (response rate: 36.1%; N control= 93, N intervention= 70). Wellbeing was measured with the Hospital Anxiety and Depression Scale (HADS) and Impact Event Scale (IES). Results No significant differences were found in wellbeing of FCs between groups. The mean scores for the HADS show no significant differences between groups for anxiety (mean score control 7,09 vs. mean score intervention 8,29) and depression (mean score control 6,72 vs. mean score intervention 7,17). No significant differences are found between groups in the mean scores for the IES. Intrusion had a mean score of 21,27 for control vs. 21,38 for intervention; Avoidance had a mean score of 10,34 for control vs. 12,72 for intervention. Conclusion Despite previous evidence about improved outcomes for wellbeing in FCs in ACP programs, our ACP intervention did not show differences between groups. Possibly the non-response or cultural discrepancies between the different countries have a part in this. More research is needed to explain what mechanisms are present. This study is supported by a grant from the FWO (nr. G034717N).

Background: Advance care planning is seen as an important strategy to improve end-of-life communication and the quality of life of patients and their relatives. However, the frequency of advance care planning conversations in practice remains low. In-depth understanding of patients’ experiences with advance care planning might provide clues to optimise its value to patients and improve implementation. Aim: To synthesise and describe the research findings on the experiences with advance care planning of patients with a life-threatening or life-limiting illness. Design: A systematic literature review, using an iterative search strategy. A thematic synthesis was conducted and was supported by NVivo 11. Data sources: The search was performed in MEDLINE, Embase, PsycINFO and CINAHL on 7 November 2016. Results: Of the 3555 articles found, 20 were included. We identified three themes in patients’ experiences with advance care planning. ‘Ambivalence’ refers to patients simultaneously experiencing benefits from advance care planning as well as unpleasant feelings. ‘Readiness’ for advance care planning is a necessary prerequisite for taking up its benefits but can also be promoted by the process of advance care planning itself. ‘Openness’ refers to patients’ need to feel comfortable in being open about their preferences for future care towards relevant others. Conclusion: Although participation in advance care planning can be accompanied by unpleasant feelings, many patients reported benefits of advance care planning as well. This suggests a need for advance care planning to be personalised in a form which is both feasible and relevant at moments suitable for the individual patient.

Background Clinical nursing practice may involve moral distress, which has been reported to occur frequently when nurses care for dying patients. Palliative sedation is a practice that is used to alleviate unbearable and refractory suffering in the last phase of life and has been linked to distress in nurses. Aim The aim of this study was to explore nurses' reports on the practice of palliative sedation focusing on their experiences with pressure, dilemmas and morally distressing situations. Methods In-depth interviews with 36 nurses working in hospital, nursing home or primary care. Results Several nurses described situations in which they felt that administration of palliative sedation was in the patient's best interest, but where they were constrained from taking action. Nurses also reported on situations where they experienced pressure to be actively involved in the provision of palliative sedation, while they felt this was not in the patient's best interest. The latter situation related to (1) starting palliative sedation when the nurse felt not all options to relieve suffering had been explored yet; (2) family requesting an increase of the sedation level where the nurse felt that this may involve unjustified hastening of death; (3) a decision by the physician to start palliative sedation where the patient had previously expressed an explicit wish for euthanasia. Conclusions Nurses experienced moral distress in situations where they were not able to act in what they believed is the patient's best interest. Situations involving moral distress require nurses to be well informed and able to adequately communicate with suffering patients, distressed family and physicians.

Onder redactie van AnneLoes van Staa, Ada ter Maten-Speksnijder en Lausanne Mies. Dit boek helpt verpleegkundigen, studenten verpleegkunde en verpleegkundig specialisten het zelfmanagement van mensen met chronische aandoeningen te ondersteunen. Dat behoort tot de kerntaak van elke verpleegkundige. Het boek geeft daarvoor de kennis, traint de vaardigheden en bespreekt de gewenste attitude, zoals een open houding, goede gespreksvoering en samenwerking met de patient en andere (mantel)zorgverleners.

A systematic review and a meta-analysis were performed to assess the associations between change over time in physical activity and weight and quality of life and mortality in colorectal cancer patients. The PubMed, Embase, and Cochrane Central Register of Controlled Trials databases were searched for English language articles published between January 1, 1990 and October 7, 2013. These articles reported results for changes in physical activity and body weight, assessed at pre- to post-diagnosis or at post-diagnosis only. A random effects model was used to analyze pooled quality of life and mortality estimates. Seven eligible studies were identified and analyzed. Increased physical activity was associated with higher overall quality of life scores (N = 3 studies; standardized mean difference (SMD) = 0.74, 95 % confidence interval (CI) = 0.66-0.82), reduced disease-specific mortality risk (hazard ratio (HRpooled) = 0.70, 95 % CI = 0.55-0.85), and reduced overall mortality (HRpooled = 0.75, CI = 0.62-0.87) (N = 2 studies). Weight gain was not associated with disease-specific (HRpooled = 1.02, CI = 0.84-1.20) or overall (HRpooled = 1.03, CI = 0.86-1.19) mortality (N = 3 studies). Increased physical activity was associated with improved quality of life, a reduced risk of colorectal cancer, and overall mortality rate. Given the paucity of the literature published on this topic, this finding should be interpreted with caution.

textabstractBackground: Palliative sedation is the widely-used intervention of administering sedating agents to induce a state of unconsciousness to take away a dying patient's perception of otherwise irrelievable symptoms. However, it remains questionable whether this ethically complex intervention is beneficial for patients and whether the associated lack of communication in the last phase of life has a negative impact on relatives' wellbeing. Methods: An observational questionnaire study was conducted among relatives of a consecutive sample of patients who died a non-sudden death in the Erasmus MC Cancer Institute or in the hospice 'Laurens Cadenza' (both in Rotterdam) between 2010 and 2013. Results: Relatives filled in questionnaires regarding 151 patients who had been sedated and 90 patients who had not been sedated. The median time since all patients had passed away was 21 (IQR 14-32) months. No significant differences were found in relatives' assessments of the quality of end-of-life care, patients' quality of life in the last week before death and their quality of dying, between patients who did and did not receive sedation, or in relatives' satisfaction with their own life, their general health and their mental wellbeing after the patient's death. Conclusions: The use of sedation in these patients appears to have no negative effect on bereaved relatives' evaluation of the patient's dying phase, or on their own wellbeing after the patient's death.

Background Healthy lifestyle might improve outcome among colorectal cancer (CRC) survivors. In this study we investigated the proportion of survivors who meet recommended lifestyle and weight guidelines and compared this to the general population. Factors that predict current behaviour were also assessed. Method A random sample of CRC survivors diagnosed between 1998 and 2007 were surveyed. Percentages of current smokers, alcohol consumers, excess weight and clustering of these variables were calculated. Using logistic regression we assessed demographical and clinical factors that predict current lifestyle and excess weight. Results We included 1349 (74% response rate) survivors in this study of whom only 8 and 16% of male and female survivors met the recommended lifestyle and body weight. Among male survivors up to 10% had at least two unhealthy lifestyle factors and among women, up to 19%. The proportion of smokers and those who had ever consumed alcohol was lower compared to the general population (13 vs. 31%, 82 vs. 86% respectively), but excess weight (BMI at least 25 kg/m2) was more prevalent among survivors (69 vs. 53% respectively). Having received chemotherapy was significantly associated with being overweight (adjusted odd ratio 1.5, 95% confidence interval 1.05–2.3). Younger patients, male gender and survivors of lower socioeconomic status were more likely to show non-compliance to healthy lifestyle recommendations. Conclusion The observed clustering of unhealthy lifestyle warrants interventions targeting multiple behaviours simultaneously. Reducing excess weight should be one of the most important targets of interventions, particularly for males, those who had chemotherapy and survivors of lower socioeconomic status.

Introduction: In The Netherlands, physicians have to be convinced that the patient suffers unbearably and hopelessly before granting a request for euthanasia. The extent to which general practitioners (GPs), consulted physicians and members of the euthanasia review committees judge this criterion similarly was evaluated.Methods: 300 GPs, 150 consultants and 27 members of review committees were sent a questionnaire with patient descriptions. Besides a "standard case'' of a patient with physical suffering and limited life expectancy, the descriptions included cases in which the request was mainly rooted in psychosocial or existential suffering, such as fear of future suffering or dependency. For each case, respondents were asked whether they recognised the case from their own practice and whether they considered the suffering to be unbearable.Results: The cases were recognisable for almost all respondents. For the "standard case'' nearly all respondents were convinced that the patient suffered unbearably. For the other cases, GPs thought the suffering was unbearable less often (2-49%) than consultants (25-79%) and members of the euthanasia review committees (24-88%). In each group, the suffering of patients with early dementia and patients who were "tired of living'' was least often considered to be unbearable.Conclusions: When non-physical aspects of suffering are central in a euthanasia request, there is variance between and within GPs, consultants and members of the euthanasia committees in their judgement of the patient's suffering. Possible explanations could be differences in their roles in the decision-making process, differences in experience with evaluating a euthanasia request, or differences in views regarding the permissibility of euthanasia.

Objectives: To investigate why physicians label end-of-life acts as either ‘euthanasia/ending of life’ or ‘alleviation of symptoms/palliative or terminal sedation’, and to study the association of such labelling with intended reporting of these acts. Methods: Questionnaires were sent to a random, stratified sample of 2100 Dutch physicians (response: 55%). They were asked to label six hypothetical end-of-life cases: three ‘standard’ cases and three cases randomly selected (out of 47), that varied according to (1) type of medication, (2) physician’s intention, (3) type of patient request, (4) patient’s life expectancy and (5) time until death. We identified the extent to which characteristics of cases are associated with physician’s labelling, with multilevel multivariable logistic regression. Results: The characteristics that contributed most to labelling cases as ‘euthanasia/ending of life’ were the administration of muscle relaxants (99% of these cases were labelled as ‘euthanasia/ending of life’) or disproportional morphine (63% of these cases were labelled accordingly). Other important factors were an intention to hasten death (54%) and a life expectancy of several months (46%). Physicians were much more willing to report cases labelled as ‘euthanasia’ (87%) or ‘ending of life’ (56%) than other cases. Conclusions: Similar cases are not uniformly labelled. However, a physicians’ label is strongly associated with their willingness to report their acts. Differences in how physicians label similar acts impede complete societal control. Further education and debate could enhance the level of agreement about what is physician-assisted dying, and thus should be reported, and what not.

Introduction: The Dutch Euthanasia Act (2002) states that euthanasia is not punishable if the attending physician acts in accordance with the statutory due care criteria. These criteria hold that: there should be a voluntary and well-considered request, the patient’s suffering should be unbearable and hopeless, the patient should be informed about their situation, there are no reasonable alternatives, an independent physician should be consulted, and the method should be medically and technically appropriate. This study investigates whether physicians experience problems with these criteria in medical practice. Methods: In 2006, questionnaires were sent to a random, stratified sample of 2100 Dutch physicians (response rate: 56%). Physicians were asked about problems in their decision-making related to requests for euthanasia or assisted suicide after enforcement of the 2002 Euthanasia Act. Results: Of all physicians who had received a request for euthanasia or assisted suicide (75%), 25% had experienced problems in the decision-making with regard to at least one of the criteria of due care. Physicians who had experienced problems mostly indicated to have had problems related to evaluating whether or not the patient’s suffering was unbearable and hopeless (79%) and whether or not the patient’s request was voluntary or well considered (58%). Discussion: Physicians in The Netherlands most frequently reported problems related to aspects in which they have to evaluate the patient’s subjective perspective(s). However, it can be questioned whether placing emphasis on these subjective aspects is an adequate fulfilment of the duties imposed on physicians, as laid down in the Dutch Euthanasia Act.

Introduction and aims Palliative sedation is a palliative care intervention for relieving severe suffering in the last phase of life. This study aims to distinguish characteristics of adequate sedation outcome compared to less favourable outcome based on physicians9 reports. Methods In 2008, a structured questionnaire was sent to a random sample of 1580 physicians working in general practice, nursing homes and hospitals regarding their last patient receiving continuous sedation until death. Adequate outcome was defined as cases where adequate relief of symptoms, good to very good quality of death and no adverse reactions were reported by the physician. Results A total of 606 physicians (38%) filled out the questionnaire, of whom 370 (61%) reported about their last case of continuous deep sedation. Cases characterised as adequate outcome (n=110) significantly more often had nausea (16% vs 7%), but less often delirium (7% vs 15%) as decisive indication for palliative sedation. Significantly more often, cases defined as adequate were sedated with the (partial) intention of hastening death (19% vs 13%), exhibited a shorter median duration of sedation (32 (IQR 16–48) versus 48 (IQR 24–73) h), had a shorter median duration to reach the required sedation depth (2 (IQR 1–4) versus 4 (IQR 2–12), were more often sedated deeper (94% vs 84%) and received a stable administration of benzodiazepines and opioids (52% vs 26%). Conclusion Differences between perceived adequate and less adequate sedation outcome may be related to intention and mode of administration of palliative sedation.