Appropriate medication use in Dutch terminal care: study protocol of a multicentre stepped-wedge cluster randomized controlled trial (the AMUSE study).

BACKGROUND: Polypharmacy is common among patients with a limited life expectancy, even shortly before death. This is partly inevitable, because these patients often have multiple symptoms which need to be alleviated. However, the use of potentially inappropriate medications (PIMs) in these patients is also common. Although patients and relatives are often willing to deprescribe medication, physicians are sometimes reluctant due to the lack of evidence on appropriate medication management for patients in the last phase of life. The aim of the AMUSE study is to investigate whether the use of CDSS-OPTIMED, a software program that gives weekly personalized medication recommendations to attending physicians of patients with a limited life expectancy, improves patients' quality of life. METHODS: A multicentre stepped-wedge cluster randomized controlled trial will be conducted among patients with a life expectancy of three months or less. The stepped-wedge cluster design, where the clusters are the different study sites, involves sequential crossover of clusters from control to intervention until all clusters are exposed. In total, seven sites (4 hospitals, 2 general practices and 1 hospice from the Netherlands) will participate in this study. During the control period, patients will receive 'care as usual'. During the intervention period, CDSS-OPTIMED will be activated. CDSS-OPTIMED is a validated software program that analyses the use of medication based on a specific set of clinical rules for patients with a limited life expectancy. The software program will provide the attending physicians with weekly personalized medication recommendations. The primary outcome of this study is patients' quality of life two weeks after baseline assessment as measured by the EORTC QLQ-C15-PAL questionnaire, quality of life question. DISCUSSION: This will be the first study investigating the effect of weekly personalized medication recommendations to attending physicians on the quality of life of patients with a limited life expectancy. We hypothesize that the CDSS-OPTIMED intervention could lead to improved quality of life in patients with a life expectancy of three months or less. TRIAL REGISTRATION: This trial is registered at ClinicalTrials.gov (NCT05351281, Registration Date: April 11, 2022).

Shared decision making with frail people with intellectual disabilities in the palliative phase: A process evaluation of the use of the In-Dialogue conversation aid in practice.

BACKGROUND: This study reports the process evaluation of the In-Dialogue conversation aid to facilitate shared decision-making with people with intellectual disabilities in the palliative phase. METHODS: Training for In-Dialogue was evaluated by 53 support staff members through questionnaires. The use of In-Dialogue in four residential care facilities for frail people with mild to severe intellectual disabilities was evaluated with semi-structured interviews with five relatives, nine support staff and three people with intellectual disabilities. RESULTS: Most participants considered the training helpful to apply shared decision-making. Sixty-three people with intellectual disabilities participated in In-Dialogue conversations. Almost all interviewees stated that these conversations provided additional insight into people's concerns and preferences. Involvement of people with profound intellectual disabilities and their relatives appeared to be challenging. CONCLUSION: Conversations about illness and the end of life appeared to be feasible with the In-Dialogue conversation aid and provided insight into people's experiences and preferences.

Meaning-making following loss among bereaved spouses during the COVID-19 pandemic (the CO-LIVE study).

This study investigates how individuals construe, understand, and make sense of experiences during the first wave of the COVID-19 pandemic. Seventeen semi-structured interviews were conducted with bereaved spouses focusing on meaning attribution to the death of their partner. The interviewees were lacking adequate information, personalized care, and physical or emotional proximity; these challenges complicated their experience of a meaningful death of their partner. Concomitantly, many interviewees appreciated the exchange of experiences with others and any last moments together with their partner. Bereaved spouses actively sought valuable moments, during and after bereavement, that contributed to the perceived meaning.

Effectiveness of the "Living with Cancer" peer self-management support program for persons with advanced cancer and their relatives: study protocol of a non-randomized stepped wedge study.

BACKGROUND: Persons with advanced cancer and their relatives experience physical, emotional, and psychosocial consequences of the illness. Most of the time, they must deal with these themselves. While peer self-management support programs may be helpful, there is little evidence on their value for this population. We present the research protocol of our SMART study that will evaluate the effectiveness of the "Living with Cancer" peer self-management support program, aimed at improving self-management behaviors, self-efficacy, and health-related quality of life of persons with advanced cancer and their relatives. METHODS: We will conduct a non-randomized stepped wedge study in the Netherlands. We will include 130 persons with advanced cancer and 32 relatives. Participants can choose to either start the program within 4 weeks after inclusion or after eight to 10 weeks. The "Living with Cancer" is a peer self-management support program, based on the Chronic Disease Self-Management Program. It consists of six 1,5 hours video-conferencing group meetings with eight to 12 participants, preceded by two or three preparatory audio clips with supportive text per session. The program has the following core components: the learning of self-management skills (action-planning, problem-solving, effective communication, and decision-making), discussing relevant themes (e.g. dealing with pain and fatigue, living with uncertainty, and future planning), and sharing experiences, knowledge, and best practices. The primary outcome for both persons with advanced cancer and relatives is self-management behavior assessed by the subscale "constructive attitudes and approaches" of the Health Education Impact Questionnaire. Secondary outcomes are other self-management behaviors, self-efficacy, health-related quality of life, symptoms, depression and anxiety, and loneliness. Participants complete an online questionnaire at baseline, and after eight and 16 weeks. After each session, they complete a logbook about their experiences. Group meetings will be video recorded. DISCUSSION: SMART aims to evaluate an innovative program building on an evidence-based self-management program. New features are its use for persons with advanced cancer, the inclusion of relatives, and the video-conferencing format for this population. The use of both quantitative and qualitative analyses will provide valuable insight into the effectiveness and value of this program. TRIAL REGISTRATION: This study was registered in the Dutch Trial Register on October 2021, identifier NL9806 .

Unraveling patients' readiness in advance care planning conversations: a qualitative study as part of the ACTION Study.

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.

Survey of veterinarians in the Netherlands on antimicrobial use for surgical prophylaxis in dairy practice.

There is increased concern about the selection pressure of antimicrobial use (AMU) in humans as well in farm animals resulting in antimicrobial (AM) resistance. The introduction of monitoring of AMU in food-producing animals since 2011 has led to a considerable quantitative reduction of AMU in those animal species in the Netherlands. This survey was conducted to explore the possibilities to improve prudent use of AM in the cattle industry. We sent an online questionnaire to 373 veterinarians and asked which antimicrobial prophylaxis they used for their most recently performed cesarean section (CS) and left displaced abomasum (LDA) correction. With a response rate of 30%, we found that older graduates used more AM for CS than recently graduated veterinarians (odds ratio = 2.4 to 2.7 depending on category), whereas antimicrobial prophylaxis in LDA surgeries was significantly different for the available surgical correction methods. The results indicate that the respondents do not adjust the surgical antimicrobial prophylaxis for different conditions of the patient or the environment; 37 (38%) respondents consider that the risks of contamination are similar for CS and LDA. In CS and all LDA correction methods preoperative prophylaxis was significantly less often applied than postoperative antimicrobial treatments (odds ratio = 0.05 and 0.08, respectively). When preoperative prophylaxis was applied, the choice of (combinations of) the AM and the timing of administration were not adequate at the start of the surgical procedure (88% for CS and 90% for LDA). We conclude that considerable qualitative (timing, choice of antimicrobial, route of administration) and quantitative (limit AMU to indicated procedures) improvement on antimicrobial prophylaxis for CS and LDA is possible by appreciation of the risks of the type of surgery (CS, LDA) and its conditions as well as by selecting classes of AM and timing and routes of administration that result in effective drug concentrations at the start of the procedure.

Shared decision-making with people with intellectual disabilities in the last phase of life: A scoping review.

BACKGROUND: Shared decision-making (SDM) is the process in which healthcare professionals and patients jointly discuss and decide which care and treatment policy is to be followed. The importance of SDM is increasingly being recognised across health settings, including palliative care. Little is known about SDM with people with intellectual disabilities (IDs) in the last phase of life. This review aimed to explore to which extent and in which way people with ID in the last phase of life are involved in decision-making about their care and treatment. METHOD: In this scoping review, we systematically searched in the Embase, Medline and PsycINFO databases for empirical studies on decision-making with people with ID in the last phase of life. RESULTS: Of a total of 281 identified titles and abstracts, 10 studies fulfilled the inclusion criteria. All focused on medical end-of-life decisions, such as foregoing life-sustaining treatment, do-not-attempt-resuscitation orders or palliative sedation. All studies emphasise the relevance of involving people with ID themselves, or at least their relatives, in making decisions at the end of life. Still, only two papers described processes of decision-making in which persons with ID actively participated. Furthermore, in only one paper, best practices and guidelines for decision-making in palliative care for people with ID were defined. CONCLUSION: Although the importance of involving people with ID in the decision-making process is emphasised, best practices or guidelines about what this should look like are lacking. We recommend developing aids that specifically support SDM with people with ID in the last phase of life.

Implantable cardioverter defibrillators at the end of life: future perspectives on clinical practice.

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.

Trained facilitators' experiences with structured advance care planning conversations in oncology: an international focus group study within the ACTION trial.

BACKGROUND: In oncology, Health Care Professionals often experience conducting Advance Care Planning (ACP) conversations as difficult and are hesitant to start them. A structured approach could help to overcome this. In the ACTION trial, a Phase III multi-center cluster-randomized clinical trial in six European countries (Belgium, Denmark, Italy, the Netherlands, Slovenia, United Kingdom), patients with advanced lung or colorectal cancer are invited to have one or two structured ACP conversations with a trained facilitator. It is unclear how trained facilitators experience conducting structured ACP conversations. This study aims to understand how facilitators experience delivering the ACTION Respecting Choices (RC) ACP conversation. METHODS: A qualitative study involving focus groups with RC facilitators. Focus group interviews were recorded, transcribed, anonymized, translated into English, and thematically analysed, supported by NVivo 11. The international research team was involved in data analysis from initial coding and discussion towards final themes. RESULTS: Seven focus groups were conducted, involving 28 of in total 39 trained facilitators, with different professional backgrounds from all participating countries. Alongside some cultural differences, six themes were identified. These reflect that most facilitators welcomed the opportunity to participate in the ACTION trial, seeing it as a means of learning new skills in an important area. The RC script was seen as supportive to ask questions, including those perceived as difficult to ask, but was also experienced as a barrier to a spontaneous conversation. Facilitators noticed that most patients were positive about their ACTION RC ACP conversation, which had prompted them to become aware of their wishes and to share these with others. The facilitators observed that it took patients substantial effort to have these conversations. In response, facilitators took responsibility for enabling patients to experience a conversation from which they could benefit. Facilitators emphasized the need for training, support and advanced communication skills to be able to work with the script. CONCLUSIONS: Facilitators experienced benefits and challenges in conducting scripted ACP conversations. They mentioned the importance of being skilled and experienced in carrying out ACP conversations in order to be able to explore the patients' preferences while staying attuned to patients' needs. TRIAL REGISTRATION: International Standard Randomised Controlled Trial Number registry 63110516 ( ISRCTN63110516 ) per 10/3/2014.

Advance care planning: A systematic review about experiences of patients with a life-threatening or life-limiting illness.

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.

Palliative sedation and moral distress: A qualitative study of nurses.

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.

Palliative care in Dutch hospitals: a rapid increase in the number of expert teams, a limited number of referrals.

BACKGROUND: Palliative care expert teams in hospitals have positive effects on the quality of life and satisfaction with care of patients with advanced disease. Involvement of these teams in medical care is also associated with substantial cost savings. In the Netherlands, professional standards state that each hospital should have a palliative care team by 2017. We studied the number of hospitals that have a palliative care team and the characteristics of these teams. METHODS: In April 2015, questionnaires were mailed to key palliative care professionals in all general, teaching and academic hospitals in the Netherlands. Out of 92 hospitals, 74 responded (80 %). RESULTS: Seventy-seven percent of all participating hospitals had a palliative care team. Other services, such as outpatient clinics (22 %), palliative care inpatient units (7 %), and palliative day care facilities (4 %) were relatively scarce. The mean number of disciplines that were represented in the teams was 6,5. The most common disciplines were nurses (72 %) and nurse practitioners (54 %), physicians specialized in internal medicine (90 %) or anaesthesiology (75 %), and spiritual caregivers (65 %). In most cases, the physicians did not have labeled hours available for their work as palliative care consultant, whereas nurses and nurse practitioners did. Most teams (77 %) were only available during office hours. Twenty-six percent of the teams could not only be consulted by healthcare professionals but also by patients or relatives. The annual number of consultations for inpatients per year ranged from 2 to 680 (median: 77). On average, teams were consulted for 0.6 % of all patients admitted to the hospitals. CONCLUSION: The number of Dutch hospitals with a palliative care team is rapidly increasing. There are substantial differences between teams regarding the disciplines represented in the teams, the procedures and the number of consultations. The development of quality standards and adequate staffing of the teams could improve the quality and effectiveness of the teams.

Association of change in physical activity and body weight with quality of life and mortality in colorectal cancer: a systematic review and meta-analysis.

PURPOSE: 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. METHODS: 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. RESULTS: 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). CONCLUSIONS: 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.

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

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

Making sense of continuous sedation in end-of-life care for cancer patients: an interview study with bereaved relatives in three European countries.

PURPOSE: The purpose of the study was to explore relatives' descriptions and experiences of continuous sedation in end-of-life care for cancer patients and to identify and explain differences between respondents from the Netherlands, Belgium, and the UK. METHODS: In-depth interviews were held between January 2011 and May 2012 with 38 relatives of 32 cancer patients who received continuous sedation until death in hospitals, the community, and hospices/palliative care units. RESULTS: Relatives' descriptions of the practice referred to the outcome, to practical aspects, and to the goals of sedation. While most relatives believed sedation had contributed to a 'good death' for the patient, yet many expressed concerns. These related to anxieties about the patient's wellbeing, their own wellbeing, and questions about whether continuous sedation had shortened the patient's life (mostly UK), or whether an alternative approach would have been better. Such concerns seemed to have been prompted by relatives witnessing unexpected events such as the patient coming to awareness during sedation. In the Netherlands and in Belgium, several relatives reported that the start of the sedation allowed for a planned moment of 'saying goodbye'. In contrast, UK relatives discerned neither an explicit point at which sedation was started nor a specific moment of farewell. CONCLUSIONS: Relatives believed that sedation contributed to the patient having a good death. Nevertheless, they also expressed concerns that may have been provoked by unexpected events for which they were unprepared. There seems to exist differences in the process of saying goodbye between the NL/BE and the UK.

Variation in medication use in cancer patients at the end of life: a cross-sectional analysis.

PURPOSE: Despite advances in cancer treatment, patients still die with unnecessary suffering. Therefore, high-quality end-of-life care is needed. Variations in medication use at the end of life may suggest areas for improvement. This study aims to describe the use of medications during the last days of life of cancer patients and to explore the possibility of using it as a quality measure. METHODS: We conducted an international survey on experts' opinions regarding potentially inappropriate medications for dying patients. Subsequently, a chart review of deceased cancer patients was conducted, which assessed the current medication use in different settings. RESULTS: The mean number of medications used in the last 3 days of life was 4.8 (SD 2.1). Hospital patients were less likely than hospice patients to receive opioids, midazolam, haloperidol, and drugs for pulmonary secretions or nausea/vomiting. Over 90 % of experts rated 12 medications as unlikely to be appropriate. Hospital patients were more likely than hospice patients to receive these potentially inappropriate medications. Before the implementation of an end-of-life care pathway, hospital patients had a higher probability, than after, to receive potentially inappropriate medication. Moreover, after implementation of such pathway, patients for whom a pathway was not used were more likely to receive potentially inappropriate medications than patients for whom it was used. CONCLUSION: Medication use at the end of life varies widely by setting, both for potentially appropriate and inappropriate medications. Combining experts' opinion and current medication use resulted in the identification of 16 medications that might be used to assess the quality of cancer care at the end of life.

The views of healthcare professionals on self-management of patients with advanced cancer: An interview study.

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.

Artificial nutrition and hydration in the last week of life in cancer patients. A systematic literature review of practices and effects.

BACKGROUND: The benefits and burdens of artificial nutrition (AN) and artificial hydration (AH) in end-of-life care are unclear. We carried out a literature review on the use of AN and AH in the last days of life of cancer patients. MATERIALS AND METHODS: We systematically searched for papers in PubMed, CINAHL, PsycInfo and EMBASE. All English papers published between January 1998 and July 2009 that contained data on frequencies or effects of AN or AH in cancer patients in the last days of life were included. RESULTS: Reported percentages of patients receiving AN or AH in the last week of life varied from 3% to 53% and from 12% to 88%, respectively. Five studies reported on the effects of AH: two found positive effects (less chronic nausea, less physical dehydration signs), two found negative effects (more ascites, more intestinal drainage) and four found also no effects on terminal delirium, thirst, chronic nausea and fluid overload. No study reported on the sole effect of AN. CONCLUSIONS: Providing AN or AH to cancer patients who are in the last week of life is a frequent practice. The effects on comfort, symptoms and length of survival seem limited. Further research will contribute to better understanding of this important topic in end-of-life care.

Mental health in people with Parkinson's disease during the COVID-19 pandemic: potential for targeted interventions?

The COVID-19 pandemic has introduced a myriad of challenges to the social life and care of people with Parkinson's disease (PD), which could potentially worsen mental health problems. We used baseline data of the PRIME-NL study (N = 844) to examine whether the association between COVID-19 stressors and mental health is disproportionately large in specific subgroups of people with PD and to explore effects of hypothetical reductions in COVID-19 stressors on mental health and quality of life. The mean (SD) age of the study population was 70.3 (7.8) years and 321 (38.0%) were women. The linear regression effect estimate of the association of COVID-19 stressors with mental health was most pronounced in women, highly educated people, people with advanced PD and people prone to distancing or seeking social support. Smaller effect estimates were found in people scoring high on confrontive coping or planful problem solving. The parametric G-formula method was used to calculate the effects of hypothetical interventions on COVID-19 stressors. An intervention reducing stressors with 50% in people with above median MDS-UPDRS-II decreased the Beck Depression Inventory in this group from 14.7 to 10.6, the State-Trait Anxiety Inventory from 81.6 to 73.1 and the Parkinson's Disease Quality of Life Questionnaire from 35.0 to 24.3. Insights from this cross-sectional study help to inform tailored care interventions to subgroups of people with PD most vulnerable to the impact of COVID-19 on mental health and quality of life.

Physicians' labelling of end-of-life practices: a hypothetical case study.

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.