BACKGROUND/OBJECTIVES: To explore the opinion of the Dutch general public and of physicians regarding euthanasia in patients with advanced dementia.
DESIGN: A cross-sectional survey.
SETTING: The Netherlands.
PARTICIPANTS: Random samples of 1,965 citizens (response = 1,965/2,641 [75%]) and 1,147 physicians (response = 1,147/2,232 [51%]).
MEASUREMENTS: The general public was asked to what extent they agreed with the statement "I think that people with dementia should be eligible for euthanasia, even if they no longer understand what is happening (if they have previously asked for it)." Physicians were asked whether they were of the opinion that performing euthanasia is conceivable in patients with advanced dementia, on the basis of a written advance directive, in the absence of severe comorbidities. Multivariable logistic regression was performed to identify factors associated with the acceptance of euthanasia.
RESULTS: A total of 60% of the general public agreed that people with advanced dementia should be eligible for euthanasia. Factors associated with a positive attitude toward euthanasia were being female, age between 40 and 69 years, and higher educational level. Considering religion important was associated with lower acceptance. The percentage of physicians who considered it acceptable to perform euthanasia in people with advanced dementia was 24% for general practitioners, 23% for clinical specialists, and 8% for nursing home physicians. Having ever performed euthanasia before was positively associated with physicians considering euthanasia conceivable. Being female, having religious beliefs, and being a nursing home physician were negatively associated with regarding performing euthanasia as conceivable.
CONCLUSION: There is a discrepancy between public acceptance of euthanasia in patients with advanced dementia and physicians' conceivability of performing euthanasia in these patients. This discrepancy may cause tensions in daily practice because patients' and families' expectations may not be met. It urges patients, families, and physicians to discuss mutual expectations in these complex situations in a comprehensive and timely manner.
OBJECTIVE: To identify barriers, as perceived by parents, to good care for children with life-threatening conditions.
DESIGN: In a nationwide qualitative study, we held in-depth interviews regarding end-of-life care with parents of children (aged 1 to 12 years) who were living with a life-threatening illness or who had died after a medical trajectory (a maximum of 5 years after the death of the child). Sampling was aimed at obtaining maximum variety for a number of factors. The interviews were transcribed and analysed.
SETTING: The Netherlands.
PARTICIPANTS: 64 parents of 44 children.
RESULTS: Parents identified six categories of difficulties that create barriers in the care for children with a life-threatening condition. First, parents wished for more empathetic and open communication about the illness and prognosis. Second, organisational barriers create bureaucratic obstacles and a lack of continuity of care. Third, parents wished for more involvement in decision-making. Fourth, parents wished they had more support from the healthcare team on end-of-life decision-making. Fifth, parents experienced a lack of attention for the family during the illness and after the death of their child. Sixth, parents experienced an overemphasis on symptom-treatment and lack of attention for their child as a person.
CONCLUSIONS: The barriers as perceived by parents focussed almost without exception on non-medical aspects: patient-doctor relationships; communication; decision-making, including end-of-life decision-making; and organisation. The perceived barriers indicate that care for children with a life-threatening condition focusses too much on symptoms and not enough on the human beings behind these symptoms.
Background: The use of continuous sedation until death (CSD) has been highly debated for many years. It is unknown how the use of CSD evolves over time. Reports suggest that there is an international increase in the use of CSD for terminally ill patients.
Objective: To gain insight in developments in the use of CSD in various countries and subpopulations.
Design: We performed a search of the literature published between January 2000 and April 2020, in Pubmed, Embase, CINAHL, Psycinfo and the Cochrane Library by using the PRISMA guidelines. The search contained the following terms: continuous sedation, terminal sedation, palliative sedation, deep sedation, end-of-life sedation, sedation practice, and sedation until death.
Results: We found 23 articles on 16 nationwide studies and 38 articles on 37 subpopulation studies. In nationwide studies on deceased persons frequencies of CSD varied from 3% in Denmark in 2001 to 18% in the Netherlands in 2015. Nationwide studies indicate an increase in the use of CSD. Frequencies of CSD in the different subpopulations varied too widely to observe time trends. Over the years more studies reported on the use of CSD for non-physical symptoms including fear, anxiety, and psycho-existential distress. In some studies, there was an increase in requests for sedation of patients and their families.
Conclusions: The frequency of CSD seems to increase over time possibly partly due to an extension of indications for sedation, from mainly physical symptoms to also non-physical symptoms.
Introduction: Experimental studies have shown that palliative care team (PCT) involvement can improve quality of life (QoL) and symptom burden of patients with advanced cancer. It is unclear to what extent this effect is sustained in daily practice of hospital care.
Objective: This observational study aims to investigate the effect of PCT consultation on QoL and symptom burden of hospitalized patients with advanced cancer in daily practice.
Methods: After admission to 1 of 9 participating hospitals, patients with advanced cancer for whom the attending physician answered “no” to the Surprise Question were invited to complete a questionnaire, including the EORTC QLQ-C15-PAL, at 6 points in time, until 3 months after admission. Outcomes were compared between patients who received PCT consultation and patients who did not, taking into account differences in baseline characteristics.
Results: A total of 164 patients consented to participate, of whom 32 received PCT consultation. Of these patients, 108 were able to complete a questionnaire at day 14, of whom 19 after receiving PCT consultation. After adjusting for baseline differences, EORTC QLQ-C15-PAL scores for pain, appetite, and emotional functioning at day 14 were more favorable for patients who received a PCT consultation.
Conclusion: PCT consultation decreased patients’ symptom burden and tends to have a positive effect on QoL of hospitalized patients with advanced cancer, even if the PCT is consulted late in the patient’s disease trajectory.
BACKGROUND: Patients in the last phase of their lives often use many medications. Physicians tend to lack awareness that reviewing the usefulness of medication at the end of patients' lives is important. The aim of this study is to gain insight into the perspectives of patients, informal caregivers, nurses and physicians on the role of nurses in medication management at the end of life.
METHODS: Semi-structured interviews were conducted with patients in the last phase of their lives, in hospitals, hospices and at home; and with their informal caregivers, nurses and physicians. Data were qualitatively analyzed using the constant comparative method.
RESULTS: Seventy-six interviews were conducted, with 17 patients, 12 informal caregivers, 15 nurses, 20 (trainee) medical specialists and 12 family physicians. Participants agreed that the role of the nurse in medication management includes: 1) informing, 2) supporting, 3) representing and 4) involving the patient, their informal caregivers and physicians in medication management. Nurses have a particular role in continuity of care and proximity to the patient. They are expected to contribute to a multidimensional assessment and approach, which is important for promoting patients' interest in medication management at the end of life.
CONCLUSIONS: We found that nurses can and should play an important role in medication management at the end of life by informing, supporting, representing and involving all relevant parties. Physicians should appreciate nurses' input to optimize medication management in patients at the end of life. Health care professionals should recognize the role the nurses can have in promoting patients' interest in medication management at the end of life. Nurses should be reinforced by education and training to take up this role.
Background: When patients receiving palliative care are transferred between care settings, adequate collaboration and information exchange between health care professionals is necessary to ensure continuity, efficiency and safety of care. Several studies identified deficits in communication and information exchange between care settings. Aim of this study was to get insight in the quality of collaboration and information exchange in palliative care from the perspectives of nurses.
Methods: We performed a cross-sectional regional survey study among nurses working in different care settings. Nurses were approached via professional networks and media. Respondents were asked questions about collaboration in palliative care in general and about their last deceased patient. Potential associations between quality scores for collaboration and information handovers and characteristics of respondents or patients were tested with Pearson’s chi-square test.
Results: A total of 933 nurses filled in the questionnaire. Nurses working in nursing homes were least positive about inter-organizational collaboration. Forty-six per cent of all nurses had actively searched for such collaboration in the last year. For their last deceased patient, 10% of all nurses had not received the information handover in time, 33% missed information they needed. An adequate information handover was positively associated with timeliness and completeness of the information and the patient being well-informed, not with procedural characteristics.
Conclusion: Nurses report that collaboration between care settings and information exchange in palliative care is suboptimal. This study suggests that health care organizations should give more attention to shared professionalization towards inter-organizational collaboration among nurses in order to facilitate high-quality palliative care.
Advance care planning enables parents to discuss goals and preferences for future care and treatment of their seriously ill child. Although clinicians report parental factors as common barriers for advance care planning, parental views on reflecting on their child’s future have had limited exploration. A clear understanding of their perspectives might help clinicians to implement advance care planning tailored to parental needs. This interpretive qualitative study using thematic analysis aims to identify how parents envision the future when caring for their seriously ill child. Single interviews and two focus groups were attended by 20 parents of 17 seriously ill children. Parents reported to focus on the near future of their child. However, their actions and deeper thoughts showed perspectives towards a further future. Future perspectives initial focused on practical, disease-related themes, but more existential elaborations, reflecting underlying life values, were also identified. Parents needed acknowledgement of their challenging situation, care tasks, and expertise as a precondition for sharing their deepest thoughts regarding the future of their child.
Conclusion: When envisioning the future of their seriously ill child, parents tend to stay in the near future, whereas they value the opportunity to share further thoughts within a compassionate relationship with clinicians.
BACKGROUND: Research requires high-quality ethical and governance scrutiny and approval. However, when research is conducted across different countries, this can cause challenges due to the differing ethico-legal framework requirements of ethical boards. There is no specific guidance for research which does not involve non-medicinal products.
AIM: To describe and address differences in ethical and research governance procedures applied by research ethics committees for non-pharmaceutical palliative care studies including adult participants in collaborative European studies.
DESIGN: An online survey analysed using descriptive statistics.
SETTING/PARTICIPANTS: Eighteen principal investigators in 11 countries conducting one of three European-funded studies.
RESULTS: There was variation in practice including whether ethical approval was required. The time to gain full approvals differed with the United Kingdom having governance procedures that took the longest time. Written consent was not required in all countries nor were data safety monitoring committees for trials. There were additional differences in relation to other data management issues.
CONCLUSION: Researchers need to take the differences in research approval procedures into account when planning studies. Future research is needed to establish European-wide recommendations for policy and practice that dovetail ethical procedures and enhance transnational research collaborations.
Objective: Even when medical treatments are limited, supporting patients’ coping strategies could improve their quality of life. Greater understanding of patients’ coping strategies, and influencing factors, can aid developing such support. We examined the prevalence of coping strategies and associated variables.
Methods: We used sociodemographic and baseline data from the ACTION trial, including measures of Denial, Acceptance, and Problem-focused coping (COPE; Brief COPE inventory), of patients with advanced cancer from six European countries. Clinicians provided clinical information. Linear mixed models with clustering at hospital level were used.
Results: Data from 675 patients with stage III/IV lung (342, 51%) or stage IV colorectal (333, 49%) cancer were used; mean age 66 (10 SD) years. Overall, patients scored low on Denial and high on Acceptance and Problem-focused coping. Older age was associated with higher scores on Denial than younger age (ß = 0.05; CI[0.023; 0.074]), and patients from Italy (ß = 1.57 CI[0.760; 2.388]) and Denmark (ß = 1.82 CI[0.881; 2.750]) scored higher on Denial than patients in other countries.
Conclusions: Patients with advanced cancer predominantly used Acceptance and Problem-focused coping, and Denial to a lesser extent. Since the studied coping strategies of patients with advanced cancer vary between subpopulations, we recommend taking these factors into account when developing tailored interventions to support patients’ coping strategies.
AIM: To evaluate the feasibility of a structured nurse-led supportive intervention and its effects on family caregivers in end-of-life care at home.
BACKGROUND: Family caregivers are crucial in end-of-life care. They may experience burden due to the responsibilities associated with caregiving. Some family caregivers feel insufficiently prepared for their caregiver role. Nurses have a unique position to provide supportive interventions at home to reduce caregivers' burden and improve preparedness. However, few nurse-led interventions are available to support family caregivers in end-of-life care at home.
DESIGN: We will perform a cluster randomised controlled trial. The clusters consist of twelve home care services, randomly assigned to the intervention group or the control group.
METHODS: The study population consists of family caregivers of patients in the last phase of life. In the intervention group, nurses will systematically assess the supportive needs of family caregivers, using an assessment tool and the method of clinical reasoning. Family members of the control group receive care as usual. Primary outcome is burden measured by the Self-Rated Burden Scale. Secondary outcomes are preparedness for caregiving, caregiving reactions and acute (hospital) admissions of the patient. In addition, the feasibility of the intervention will be evaluated. The study was funded in October 2016 and was ethically approved in April 2019.
IMPACT: Findings from this study will contribute to the scientific and practical knowledge of nursing interventions to support family caregivers in end-of-life care.
BACKGROUND: Patients with advanced cancer are increasingly expected to self-manage. Thus far, this topic has received little systematic attention.
AIM: To summarise studies describing self-management strategies of patients with advanced cancer and associated experiences and personal characteristics. Also, to summarise attitudes of relatives and healthcare professionals towards patient self-management.
DESIGN: A systematic review including non-experimental quantitative and qualitative studies. Data were analysed using critical interpretive synthesis. Included studies were appraised on methodological quality and quality of reporting.
DATA SOURCES: MEDLINE, Embase, Cochrane Central, PsycINFO, CINAHL, Web of Science and Google Scholar (until 11 June 2019).
RESULTS: Of 1742 identified articles, 31 moderate-quality articles describing 8 quantitative and 23 qualitative studies were included. Patients with advanced cancer used self-management strategies in seven domains: medicine and pharmacology, lifestyle, mental health, social support, knowledge and information, navigation and coordination and medical decision-making (29 articles). Strategies were highly individual, sometimes ambivalent and dependent on social interactions. Older patients and patients with more depressive symptoms and lower levels of physical functioning, education and self-efficacy might have more difficulties with certain self-management strategies (six articles). Healthcare professionals perceived self-management as desirable and achievable if based on sufficient skills and knowledge and solid patient-professional partnerships (three articles).
CONCLUSION: Self-management of patients with advanced cancer is highly personal and multifaceted. Strategies may be substitutional, additional or even conflicting compared to care provided by healthcare professionals. Self-management support can benefit from an individualised approach embedded in solid partnerships with relatives and healthcare professionals.
BACKGROUND: Early palliative care team consultation has been shown to reduce costs of hospital care. The objective of this study was to investigate the association between palliative care team (PCT) consultation and the content and costs of hospital care in patients with advanced cancer.
MATERIAL AND METHODS: A prospective, observational study was conducted in 12 Dutch hospitals. Patients with advanced cancer and an estimated life expectancy of less than 1 year were included. We compared hospital care during 3 months of follow-up for patients with and without PCT involvement. Propensity score matching was used to estimate the effect of PCTs on costs of hospital care. Additionally, gamma regression models were estimated to assess predictors of hospital costs.
RESULTS: We included 535 patients of whom 126 received PCT consultation. Patients with PCT had a worse life expectancy (life expectancy <3 months: 62% vs. 31%, p < .01) and performance status (p < .01, e.g., WHO status higher than 2:54% vs. 28%) and more often had no more options for anti-tumour therapy (57% vs. 30%, p < .01). Hospital length of stay, use of most diagnostic procedures, medication and other therapeutic interventions were similar. The total mean hospital costs were €8,393 for patients with and €8,631 for patients without PCT consultation. Analyses using propensity scores to control for observed confounding showed no significant difference in hospital costs.
CONCLUSIONS: PCT consultation for patients with cancer in Dutch hospitals often occurs late in the patients' disease trajectories, which might explain why we found no effect of PCT consultation on costs of hospital care. Earlier consultation could be beneficial to patients and reduce costs of care.
Background: Physicians who receive a request for euthanasia or assisted suicide may experience a conflict of duties: the duty to preserve life on the one hand and the duty to relieve suffering on the other hand. Little is known about experiences of physicians with receiving and granting a request for euthanasia or assisted suicide. This study, therefore, aimed to explore the concerns, feelings and pressure experienced by physicians who receive requests for euthanasia or assisted suicide.
Methods: In 2016, a cross-sectional study was conducted. Questionnaires were sent to a random sample of 3000 Dutch physicians. Physicians who had been working in adult patient care in the Netherlands for the last year were included in the sample (n = 2657). Half of the physicians were asked about the most recent case in which they refused a request for euthanasia or assisted suicide, and half about the most recent case in which they granted a request for euthanasia or assisted suicide.
Results: Of the 2657 eligible physicians, 1374 (52%) responded. The most reported reason not to participate was lack of time. Of the respondents, 248 answered questions about a refused euthanasia or assisted suicide request and 245 about a granted EAS request. Concerns about specific aspects of the euthanasia and assisted suicide process, such as the emotional burden of preparing and performing euthanasia or assisted suicide were commonly reported by physicians who refused and who granted a request. Pressure to grant a request was mostly experienced by physicians who refused a request, especially if the patient was =80 years, had a life-expectancy of =6 months and did not have cancer. The large majority of physicians reported contradictory emotions after having performed euthanasia or assisted suicide.
Conclusions: Society should be aware of the impact of euthanasia and assisted suicide requests on physicians. The tension physicians experience may decrease their willingness to perform euthanasia and assisted suicide. On the other hand, physicians should not be forced to cross their own moral boundaries or be tempted to perform euthanasia and assisted suicide in cases that may not meet the due care criteria.
Context: Migrant populations across Europe are aging and will increasingly need end-of-life care.
Objective: To gain insight into end-of-life care and decision-making for patients with a non-western migration background and assess differences compared to patients with a Dutch or western migration background.
Methods: A mortality follow-back study using a stratified sample of death certificates of persons who died between August and December 2015, obtained from the central death registry of Statistics Netherlands. Questionnaires were sent to the attending physician (n = 9,351; response 78%). Patients aged = 18 who died a non-sudden death were included in this study (n = 5,327).
Results: Patients with a non-western migration background are more likely than patients with a Dutch or western migration background to be admitted to and die in hospital (51,6% vs. 33,9% [OR 1.74 CI95% 1.26 – 2.41]; 39,1% vs. 20,1% [OR 1.96 CI95% 1.39 – 2.78]); less likely to receive morphine or morphine-like medication and continuous deep sedation (72,8% vs. 80,1% [OR 0.62 CI95% 0.43 – 0.89]; 16,8% vs. 25,2% [OR 0.52 CI95% 0.34 – 0.80]); and more likely to receive end-of-life care that, according to physicians, is directed at curation for too long (6,8% vs. 1,7% [OR 3.61 CI95% 1.83 – 7.12]). End-of-life decisions are made less frequently for patients with a non-western migration background (71,6% vs. 79,2% [OR 0.64 CI95% 0.45 – 0.91]). Characteristics of decision-making are similar.
Conclusion: End-of-life care for patients with a non-western migration background focuses more, or longer on maximum, curative treatment and end-of-life decisions are made less often.
BACKGROUND: Euthanasia and assisted suicide laws in the Netherlands require physicians meet clinical guidelines when performing the practice to ensure death is peaceful and painless. Despite oversight by the regional review committees over each case, little research exists into the frequency of guideline deviation and the reasons for nonadherence.
METHODS: Cases reported and reviewed between 2012 and 2017 that did not meet due medical care were analysed for thematic content. Semistructured interviews were conducted with 11 Dutch physicians on their experience with the clinical and pharmacological elements of euthanasia and assisted suicide, their interaction and comportment with the recommended guidelines, and reasons why guideline deviation might occur. Reported case reviews and interviews were used to obtain themes and subthemes to understand how and why deviations from clinical guidelines happened.
RESULTS: Violations of due medical care were found in 42 (0.07%) of reported cases. The regional review committees found physicians in violation of due medical care mostly for inadequate confirmation of coma-induction and deviations from recommended drug dosages. Physicians reported that they rarely deviated from the guidelines, with the most common reasons being concern for the patient's family, concern over the drug efficacy, mistrust in the provided guidelines, or relying on the poor advice of pharmacists or hospital administrators.
CONCLUSIONS: Deviations from the guidelines and violations of due medical care are rare, but should nonetheless be monitored and prevented. A few areas for improvement include skills training for physicians, consistency between review committee rulings, and further clarity on dosage recommendations.
AIM: Advance care planning (ACP) is a strategy to align future care and treatment with preferences of patients and families. This study assesses the experiences of ACP among paediatricians caring for children with life-limiting conditions.
METHODS: Paediatricians from six Dutch university hospitals completed a survey during May to September 2017 which investigated experiences with ACP in their most recent case of a deceased child and with ACP in general.
RESULTS: A total of 207 paediatricians responded (36%). After exclusion of responses with insufficient data (n=39), 168 were analysed (29%). These included experiences with an individual case in 86%. ACP themes were discussed with parents in all cases. Topics common to many cases were diagnosis, life expectancy, care goals, the parent's fears, and code status. ACP conversations occurred with children in 23% of cases. The joy in living was the most frequent topic. The frequency of ACP conversations was insufficient according to 49% of the respondents. In 60% it was stated that ACP has to result in a documented code status.
CONCLUSION: Paediatricians reported having ACP conversations mainly with parents focusing on medical issues. There was limited insight into the child's preferences for care and treatment.
OBJECTIVE: Implantable cardioverter defibrillators can treat life-threatening arrhythmias, but may negatively influence the last phase of life if not deactivated. Advance care planning conversations can prepare patients for future decision-making about implantable cardioverter defibrillator deactivation. This study aimed at gaining insight in the experiences of patients with advance care planning conversations about implantable cardioverter defibrillator deactivation.
METHODS: In this qualitative study, we held five focus groups with 41 patients in total. Focus groups were audio-recorded and transcribed. Transcripts were analysed thematically, using the constant comparative method, whereby themes emerging from the data are compared with previously emerged themes.
RESULTS: Most patients could imagine deciding to have their implantable cardioverter defibrillator deactivated, for instance because the benefits of an active device no longer outweigh the harm of unwanted shocks, when having another life-limiting illness, or when relatives would think this would be in their best interest. Some patients expressed a need for advance care planning conversations with a healthcare professional about deactivation, but few had had these. Others did not, saying they solely focused on living. Some patients were hesitant to record their preferences about deactivation in advance care directives, because they were unsure whether their current preferences would reflect future preferences.
CONCLUSIONS: Although patients expressed a need for more information, advance care planning conversations about implantable cardioverter defibrillator deactivation seemed to be uncommon. Deactivation should be more frequently addressed by healthcare professionals, tailored to the disease stage of the patient and readiness to discuss this topic.
OBJECTIVES: To determine the effectiveness of advance care planning (ACP) in frail older adults.
DESIGN: Cluster randomized controlled trial.
SETTING: Residential care homes in the Netherlands (N=16).
PARTICIPANTS: Care home residents and community-dwelling adults receiving home care (N=201; n=101 intervention; n=100 control). Participants were 75 years and older, frail, and capable of consenting to participation.
INTERVENTION: Adjusted Respecting Choices ACP program.
MEASUREMENTS: The primary outcome was change in patient activation (Patient Activation Measure, PAM-13) between baseline and 12-month follow-up. Secondary outcomes included change in quality of life (SF-12), advance directive (AD) completion, and surrogate decision-maker appointment. Use of medical care in the 12 months after inclusion was also assessed. Multilevel analyses were performed, controlling for clustering effects and differences in demographics.
RESULTS: Seventy-seven intervention participants and 83 controls completed the follow-up assessment. There were no statistically significant differences between the intervention (-0.26±11.2) and control group (-1.43±10.6) in change scores of the PAM (p=.43) or the SF-12. Of intervention group participants, 93% completed an AD, and 94% appointed a decision-maker. Of control participants, 34% completed an AD, and 67% appointed a decision-maker (p<.001). No differences in the use of medical care were found.
CONCLUSIONS: ACP did not increase levels of patient activation or quality of life but did increase completion of ADs and appointment of surrogate decision-makers. It did not affect use of medical care.
BACKGROUND: Although euthanasia and assisted suicide (EAS) in people with psychiatric disorders is relatively rare, the increasing incidence of EAS requests has given rise to public and political debate. This study aimed to explore support of the public and physicians for euthanasia and assisted suicide in people with psychiatric disorders and examine factors associated with acceptance and conceivability of performing EAS in these patients.
METHODS: A survey was distributed amongst a random sample of Dutch 2641 citizens (response 75%) and 3000 physicians (response 52%). Acceptance and conceivability of performing EAS, demographics, health status and professional characteristics were measured. Multivariable logistic regression analyses were performed.
RESULTS: Of the general public 53% were of the opinion that people with psychiatric disorders should be eligible for EAS, 15% was opposed to this, and 32% remained neutral. Higher educational level, Dutch ethnicity, and higher urbanization level were associated with higher acceptability of EAS whilst a religious life stance and good health were associated with lower acceptability. The percentage of physicians who considered performing EAS in people with psychiatric disorders conceivable ranged between 20% amongst medical specialists and 47% amongst general practitioners. Having received EAS requests from psychiatric patients before was associated with considering performing EAS conceivable. Being female, religious, medical specialist, or psychiatrist were associated with lower conceivability. The majority (> 65%) of the psychiatrists were of the opinion that it is possible to establish whether a psychiatric patient’s suffering is unbearable and without prospect and whether the request is well-considered.
CONCLUSION: The general public shows more support than opposition as to whether patients suffering from a psychiatric disorder should be eligible for EAS, even though one third of the respondents remained neutral. Physicians' support depends on their specialization; 39% of psychiatrists considered performing EAS in psychiatric patients conceivable. The relatively low conceivability is possibly explained by psychiatric patients often not meeting the eligibility criteria.
OBJECTIVES: At the end of life oral fluid intake is often reduced. Consensus about the most appropriate management for terminally ill patients with limited oral fluid intake is lacking. The objective of this study is to investigate to what extent the amount of fluid intake, preceding and during the dying phase, is related to the occurrence of death rattle and terminal restlessness.
METHODS: A multicentre prospective observational study was performed. Data on the occurrence of death rattle and terminal restlessness, fluid intake and opioid use of patients expected to die within a few days or hours were collected.
RESULTS: 371 patients were included. Death rattle was reported at least once in 40% (n=149) of patients during the dying phase. Death rattle occurrence was not associated with the amount of fluid intake during the days before dying. Terminal restlessness was reported in 26% of patients (n=96). Terminal restlessness was not associated with a lower amount of fluid intake during the days before dying. Terminal restlessness during the last 24 hours of life was associated with a higher amount of fluid (ie, >250 mL/day) during 48–25 hours before death.
CONCLUSIONS: Caution with fluid intake to prevent development of death rattle does not seem to be necessary. Our study suggests that a higher amount of fluid intake during 48–25 hours before death may be associated with the occurrence of terminal restlessness during the last 24 hours of life. These results suggest that actively providing dying patients with artificial fluid may not be beneficial.