BACKGROUND: The oligometastatic paradigm suggests that some patients with a limited number of metastases might be cured if all lesions are eradicated. Evidence from randomised controlled trials to support this paradigm is scarce. We aimed to assess the effect of stereotactic ablative radiotherapy (SABR) on survival, oncological outcomes, toxicity, and quality of life in patients with a controlled primary tumour and one to five oligometastatic lesions.
METHODS: This randomised, open-label phase 2 study was done at 10 hospitals in Canada, the Netherlands, Scotland, and Australia. Patients aged 18 or older with a controlled primary tumour and one to five metastatic lesions, Eastern Cooperative Oncology Group score of 0-1, and a life expectancy of at least 6 months were eligible. After stratifying by the number of metastases (1-3 vs 4-5), we randomly assigned patients (1:2) to receive either palliative standard of care treatments alone (control group), or standard of care plus SABR to all metastatic lesions (SABR group), using a computer-generated randomisation list with permuted blocks of nine. Neither patients nor physicians were masked to treatment allocation. The primary endpoint was overall survival. We used a randomised phase 2 screening design with a two-sided a of 0·20 (wherein p<0·20 designates a positive trial). All analyses were intention to treat. This study is registered with ClinicalTrials.gov, number NCT01446744.
FINDINGS: 99 patients were randomised between Feb 10, 2012, and Aug 30, 2016. Of 99 patients, 33 (33%) were assigned to the control group and 66 (67%) to the SABR group. Two (3%) patients in the SABR group did not receive allocated treatment and withdrew from the trial; two (6%) patients in the control group also withdrew from the trial. Median follow-up was 25 months (IQR 19-54) in the control group versus 26 months (23-37) in the SABR group. Median overall survival was 28 months (95% CI 19-33) in the control group versus 41 months (26-not reached) in the SABR group (hazard ratio 0·57, 95% CI 0·30-1·10; p=0·090). Adverse events of grade 2 or worse occurred in three (9%) of 33 controls and 19 (29%) of 66 patients in the SABR group (p=0·026), an absolute increase of 20% (95% CI 5-34). Treatment-related deaths occurred in three (4·5%) of 66 patients after SABR, compared with none in the control group.
INTERPRETATION: SABR was associated with an improvement in overall survival, meeting the primary endpoint of this trial, but three (4·5%) of 66 patients in the SABR group had treatment-related death. Phase 3 trials are needed to conclusively show an overall survival benefit, and to determine the maximum number of metastatic lesions wherein SABR provides a benefit.
FUNDING: Ontario Institute for Cancer Research and London Regional Cancer Program Catalyst Grant.
OBJECTIVES: This study examined trajectories of emotional functioning in three domains (depressive symptoms, emotional and social loneliness) for individuals who experienced spousal bereavement, and investigated cross-domain adaptation. We hypothesized that emotional difficulties after bereavement would be more detectable in emotional loneliness than depressive symptoms or social loneliness.
METHOD: Using latent class growth analysis, we modelled changes in depressive symptoms, emotional loneliness and social loneliness from 12 years pre- to 12 years post-bereavement on data from 686 older adults to identify trajectories indicating adaptive and maladaptive functioning in each domain.
RESULTS: Most participants reported depressive symptoms below the clinically relevant threshold by showing a resilient (15.5%) or a slightly elevated (53.5%) trajectory post-bereavement. One-third (31%) reported clinically relevant depressive symptoms. More than half of the sample reported emotional loneliness post-bereavement, varying form prolonged (17%), increasing and prolonged (28.3%), and chronically high (8.9%) levels. Remaining participants displayed resilience (13.5%) or recovery (32.3%). Social loneliness showed four trajectories: very low and resilient (43.3%), low and resilient (27.5%), increasing (20.2%), and chronically high (9%) levels. One third of participants maintained adaptive, whereas 12% displayed maladaptive, functioning across all domains post-bereavement.
DISCUSSION: An increase in emotional loneliness was the most commonly observed change after spousal bereavement. This highlights the central role of emotional loneliness in depression after bereavement.
OBJECTIVE: To examine perceptions and experiences regarding providing spiritual care at the end of life of elderly care physicians practising in nursing homes in the Netherlands, and factors associated with spiritual care provision.
METHODS: A cross-sectional survey was sent to a representative sample of 642 elderly care physicians requesting information about their last patient who died and the spiritual care they provided. We compared their general perception of spiritual care with spiritual and other items abstracted from the literature and variables associated with the physicians' provision of spiritual care. Self-reported reasons for providing spiritual care were analysed with qualitative content analysis.
RESULTS: The response rate was 47.2%. Almost half (48.4%) provided spiritual end-of-life care to the last resident they cared for. Half (51.8%) identified all 15 spiritual items, but 95.4% also included psychosocial items in their perception of spirituality and 49.1% included other items. Physicians who included more non-spiritual items reported more often that they provided spiritual care, as did more religious physicians and those with additional training in palliative care. Reasons for providing spiritual care included a request by the resident or the relatives, resident's religiousness, fear of dying and involvement of a healthcare chaplain.
CONCLUSION: Most physicians perceived spirituality as a broad concept and this increased self-reported spiritual caregiving. Religious physicians and those trained in palliative care may experience fewer barriers to providing spiritual care. Additional training in reflecting upon the physician's own perception of spirituality and training in multidisciplinary spiritual caregiving may contribute to the quality of end-of-life care for nursing home residents.
BACKGROUND: Family members do not have an official position in the practice of euthanasia and physician assisted suicide (EAS) in the Netherlands according to statutory regulations and related guidelines. However, recent empirical findings on the influence of family members on EAS decision-making raise practical and ethical questions. Therefore, the aim of this review is to explore how family members are involved in the Dutch practice of EAS according to empirical research, and to map out themes that could serve as a starting point for further empirical and ethical inquiry.
METHODS: A systematic mixed studies review was performed. The databases Pubmed, Embase, PsycInfo, and Emcare were searched to identify empirical studies describing any aspect of the involvement of family members before, during and after EAS in the Netherlands from 1980 till 2018. Thematic analysis was chosen as method to synthesize the quantitative and qualitative studies.
RESULTS: Sixty-six studies were identified. Only 14 studies had family members themselves as study participants. Four themes emerged from the thematic analysis. 1) Family-related reasons (not) to request EAS. 2) Roles and responsibilities of family members during EAS decision-making and performance. 3) Families' experiences and grief after EAS. 4) Family and 'the good euthanasia death' according to Dutch physicians.
CONCLUSION: Family members seem to be active participants in EAS decision-making, which goes hand in hand with ambivalent feelings and experiences. Considerations about family members and the social context appear to be very important for patients and physicians when they request or grant a request for EAS. Although further empirical research is needed to assess the depth and generalizability of the results, this review provides a new perspective on EAS decision-making and challenges the Dutch ethical-legal framework of EAS. Euthanasia decision-making is typically framed in the patient-physician dyad, while a patient-physician-family triad seems more appropriate to describe what happens in clinical practice. This perspective raises questions about the interpretation of autonomy, the origins of suffering underlying requests for EAS, and the responsibilities of physicians during EAS decision-making.
BACKGROUND: The aim of this study was to evaluate the implementation process of a multidisciplinary approach for potential organ donors in the emergency department (ED) in order to incorporate organ donation into their end-of-life care plans.
METHODS: A new multidisciplinary approach was implemented in six hospitals in the Netherlands between January 2016 and January 2018. The approach was introduced during staff meetings in the ED, Intensive Care Unit (ICU) and neurology department. When patients with a devastating brain injury (DBI) had a futile prognosis in the ED, without contra indications for organ donation, an ICU admission was considered. Every ICU admission to incorporate organ donation into end-of-life care was systematically evaluated with the involved physicians using a standardized questionnaire.
RESULTS: In total, 55 potential organ donors were admitted to the ICU to incorporate organ donation into end-of-life care. Twenty-seven families consented to donation and 20 successful organ donations were performed. Twenty-nine percent of the total pool of organ donors in these hospitals were admitted to the ICU for organ donation.
CONCLUSIONS: Patients with a DBI and futile medical prognosis in the ED are an important proportion of the total number of donors. The implementation of a multidisciplinary approach is feasible and could lead to better identification of potential donors in the ED.
BACKGROUND: Euthanasia or assisted suicide (EAS) for psychiatric disorders, legal in some countries, remains controversial. Personality disorders are common in psychiatric EAS. They often cause a sense of irremediable suffering and engender complex patient-clinician interactions, both of which could complicate EAS evaluations.
METHODS: We conducted a directed-content analysis of all psychiatric EAS cases involving personality and related disorders published by the Dutch regional euthanasia review committees (N = 74, from 2011 to October 2017).
RESULTS: Most patients were women (76%, n = 52), often with long, complex clinical histories: 62% had physical comorbidities, 97% had at least one, and 70% had two or more psychiatric comorbidities. They often had a history of suicide attempts (47%), self-harming behavior (27%), and trauma (36%). In 46%, a previous EAS request had been refused. Past psychiatric treatments varied: e.g. hospitalization and psychotherapy were not tried in 27% and 28%, respectively. In 50%, the physician managing their EAS were new to them, a third (36%) did not have a treating psychiatrist at the time of EAS request, and most physicians performing EAS were non-psychiatrists (70%) relying on cross-sectional psychiatric evaluations focusing on EAS eligibility, not treatment. Physicians evaluating such patients appear to be especially emotionally affected compared with when personality disorders are not present.
CONCLUSIONS: The EAS evaluation of persons with personality disorders may be challenging and emotionally complex for their evaluators who are often non-psychiatrists. These factors could influence the interpretation of EAS requirements of irremediability, raising issues that merit further discussion and research.
BACKGROUND: The medical-ethical dilemmas related to euthanasia and physician-assisted suicide (EAS) in psychiatric patients are highly relevant in an international context. EAS in psychiatric patients appears to become more frequent in the Netherlands. However, little is known about the experiences of psychiatrists with this practice. This study aims to estimate the incidence of EAS (requests) in psychiatric practice in The Netherlands and to describe the characteristics of psychiatric patients requesting EAS, the decision-making process and outcomes of these requests.
METHODS: In the context of the third evaluation of the Dutch Euthanasia Act, a cross-sectional study was performed between May and September 2016. A questionnaire was sent to a random sample of 500 Dutch psychiatrists. Of the 425 eligible psychiatrists 49% responded. Frequencies of EAS and EAS requests were estimated. Detailed information was asked about the most recent case in which psychiatrists granted and/or refused an EAS request, if any.
RESULTS: The total number of psychiatric patients explicitly requesting for EAS was estimated to be between 1100 and 1150 for all psychiatrists in a one year period from 2015 to 2016. An estimated 60 to 70 patients received EAS in this period. Nine psychiatrists described a case in which they granted an EAS request from a psychiatric patient. Five of these nine patients had a mood disorder. Three patients had somatic comorbidity. Main reasons to request EAS were 'depressive feelings' and 'suffering without prospect of improvement'. Sixty-six psychiatrists described a case in which they refused an EAS request. 59% of these patients had a personality disorder and 19% had somatic comorbidity. Main reasons to request EAS were 'depressive feelings' and 'desperate situations in several areas of life'. Most requests were refused because the due care criteria were not met.
CONCLUSIONS: Although the incidence of EAS in psychiatric patients increased over the past two decades, this practice remains relatively rare. This is probably due to the complexity of assessing the due care criteria in case of psychiatric suffering. Training and support may enable psychiatrists to address this sensitive issue in their work better.
BACKGROUND: Recently, euthanasia and assisted suicide (EAS) in patients with psychiatric disorders, dementia, or an accumulation of health problems has taken a prominent place in the public debate. However, limited is known about this practice. The purpose of this study was threefold: to estimate the frequency of requesting and receiving EAS among people with (also) a psychiatric disorder, dementia, or an accumulation of health problems; to explore reasons for physicians to grant or refuse a request; and to describe differences in characteristics, including the presence of psychiatric disorders, dementia, and accumulation of health problems, between patients who did and did not request EAS and between patients whose request was or was not granted.
METHODS: A nationwide cross-sectional survey study was performed. A stratified sample of death certificates of patients who died between 1 August and 1 December 2015 was drawn from the central death registry of Statistics Netherlands. Questionnaires were sent to the certifying physician (n = 9351, response 78%). Only deceased patients aged = 17 years and who died a non-sudden death were included in the analyses (n = 5361).
RESULTS: The frequency of euthanasia requests among deceased people who died non-suddenly and with (also) a psychiatric disorder (11.4%), dementia (2.1%), or an accumulation of health problems (8.0%) varied. Factors positively associated with requesting euthanasia were age (< 80 years), ethnicity (Dutch/Western), cause of death (cancer), attending physician (general practitioner), and involvement of a pain specialist or psychiatrist. Cause of death (neurological disorders, another cause) and attending physician (general practitioner) were also positively associated with receiving euthanasia. Psychiatric disorders, dementia, and/or an accumulation of health problems were negatively associated with both requesting and receiving euthanasia.
CONCLUSIONS: EAS in deceased patients with psychiatric disorders, dementia, and/or an accumulation of health problems is relatively rare. Partly, this can be explained by the belief that the due care criteria cannot be met. Another explanation is that patients with these conditions are less likely to request EAS.
OBJECTIVES: To examine family caregivers' experiences with end-of-life care for nursing home residents with dementia and associations with the residents dying peacefully.
DESIGN: A secondary data analysis of family caregiver data collected in the observational Dutch End of Life in Dementia (DEOLD) study between 2007 and 2010.
SETTING AND PARTICIPANTS: Data were collected at 34 Dutch nursing homes (2799 beds) representing the nation. We included 252 reports from bereaved family members of nursing home residents with dementia.
MEASURES: The primary outcome was dying peacefully, assessed by family members using an item from the Quality of Dying in Long-term Care instrument. Unpleasant experiences with end-of-life care were investigated using open-ended questions. Overall satisfaction with end-of-life care was assessed with the End-of-Life Satisfaction With Care (EOLD-SWC) scale, and families' appraisal of decision making was measured with the Decision Satisfaction Inventory. Associations were investigated with multilevel linear regression analyses using generalized estimating equations.
RESULTS: Families' reports of unpleasant experiences translated into 2 themes: neglect and lack of respect. Neglect involved facing inaccessibility, disinterest, or discontinuity of relations, and negligence in tailored care and information. Lack of respect involved perceptions of being purposefully disregarded, an insensitive approach towards resident and family, noncompliance with agreements, and violations of privacy. Unpleasant experiences with end-of-life care were negatively associated with families' perceptions of the resident dying peacefully. Families' assessment of their relative dying peacefully was positively associated with satisfaction with end-of-life care and decision making.
CONCLUSIONS/IMPLICATIONS: Families' reports of unpleasant experiences with end-of-life care may inform practice to improve perceived quality of dying of their loved ones. Humane and compassionate care and attention from physicians and other staff for resident and family may facilitate recollections of a peaceful death.
BACKGROUND: The Needs Assessment Tool: Progressive Disease - Heart Failure (NAT:PD-HF) was developed to identify and triage palliative care needs in patients with chronic heart failure. A Dutch version is currently lacking.
AIMS: The aim of this study was to investigate the feasibility and acceptability of a Dutch NAT:PD-HF in chronic heart failure outpatients; and to gain preliminary data regarding the effect of the NAT:PD-HF on palliative care referral, symptoms, health status, care dependency, caregiver burden and advance directives.
METHODS: A mixed methods study including 23 outpatients with advanced chronic heart failure and 20 family caregivers was performed. Nurses conducted patient consultations using a Dutch translation of the NAT:PD-HF and rated acceptability. Before this visit and 4 months later, symptoms, health status, performance status, care dependency, caregiver burden and recorded advance directives were assessed. A focus group with participating nurses discussed barriers and facilitators towards palliative care needs assessment.
RESULTS: Acceptability was rated as 7 (interquartile range 6-7 points) on a 10-point scale. All patients had palliative care needs. In 48% actions were taken, including two patients referred to palliative care. Symptoms, performance status, care dependency, caregiver burden and advance directives were unchanged at 4 months, while health status deteriorated in patients completing follow-up ( n=17). Barriers towards palliative care needs assessment included feeling uncomfortable to initiate discussions and concerns about the ability to address palliative care needs.
CONCLUSIONS: The NAT:PD-HF identified palliative care needs in all participants, and triggered action to address these in half. However, training in palliative care communication skills as well as palliative care interventions should accompany the introduction of a palliative care needs assessment tool.
Background and purpose: Palliative radiotherapy (RT) is one of the treatment options for bleeding tumours; a frequent symptom in patients with advanced cancer. The optimal RT schedule is however unclear. This study explores the current pattern of practice of palliative RT for bleeding tumours in the Netherlands.
Materials and methods: An internet-based questionnaire, including respondent characteristics, factors influencing the choice of RT schedules and five patient case scenarios, was sent to all members of the Dutch Society for Radiation Oncology. Descriptive statistics were used to evaluate the results.
Results: The response rate was 125/374 (34%); representing 20 out of 21 Dutch RT departments. Most reported influencing factors were performance status, prognosis, patients’ comfort and patients’ choice. Most preferred RT schedules were 1 × 8 Gy for hematemesis, 1 × 8 Gy and 5 × 4 Gy for haemoptysis, 5 × 4 Gy for haematuria, 5 × 5 Gy for rectal bleeding, 1 × 8 Gy, 5 × 4 Gy and 10-13 × 3 Gy for vaginal bleeding.
Conclusions: The current patterns of practice in the Netherlands for bleeding tumours varied considerably. Most often a single fraction is chosen (35% of all cases), followed by a five-fraction schedule (30% of all cases). The choice of an RT schedule is mainly influenced by patient related factors.
Background: Chronic progressive neurological diseases like high grade glioma (HGG), Parkinson's disease (PD), and multiple sclerosis (MS) are incurable, and associated with increasing disability including cognitive impairment, and reduced life expectancy. Patients with these diseases have complex care needs. Therefore, timely advance care planning (ACP) is required. Our aim was to investigate timing and content of discussions on treatment restrictions, i.e., to initiate, withhold, or withdraw treatment in patients with HGG, PD, and MS, from the neurologists' perspective. Methods: We performed a national online survey amongst consultants in neurology and residents in The Netherlands. The questionnaire focused on their daily practice concerning timing and content of discussions on treatment restrictions with patients suffering from HGG, PD or MS. We also inquired about education and training in discussing these issues. Results: A total of 125 respondents [89 neurologists (71%), 62% male, with a median age of 44 years, and 36 residents (29%), 31% male with a median age of 29 years] responded. Initial discussions on treatment restrictions were said to take place during the first year after diagnosis in 28% of patients with HGG, and commonly no earlier than in the terminal phase in patients with PD and MS. In all conditions, significant cognitive decline was the most important trigger to advance discussions, followed by physical decline, and initiation of the terminal phase. Most discussed issues included ventilation, resuscitation, and admission to the intensive care unit. More than half of the consultants in neurology and residents felt that they needed (more) education and training in having discussions on treatment restrictions.
Conclusion: In patients with HGG discussions on treatment restrictions are initiated earlier than in patients with PD or MS. However, in all three diseases these discussions usually take place when significant physical and cognitive decline has become apparent and commonly mark the initiation of end-of-life care. More than half of the responding consultants in neurology and residents feel the need for improvement of their skills in performing these discussions.
Background: An important part of palliative care is discussing preferences at end of life, however such conversations may not often occur. Care staff with greater self-efficacy towards end-of-life communication are probably more likely to have such discussions, however, there is a lack of research on self-efficacy towards end-of-life discussions among long-term care staff in Europe and related factors.
Objectives: Firstly, to describe and compare the self-efficacy level of long-term care staff regarding end-of-life communication across six countries; secondly, to analyse characteristics of staff and facilities which are associated to self-efficacy towards end-of-life communication.
Design: Cross-sectional survey.
Settings: Long-term care facilities in Belgium, England, Finland, Italy, the Netherlands and Poland (n=290).
Participants: Nurses and care assistants (n=1680) completed a self-efficacy scale and were included in the analyses.
Methods: Care staff rated their self-efficacy (confidence in their own ability) on a scale of 0 (cannot do at all) to 7 -(certain can do) of the 8-item communication subscale of the Self-efficacy in End-of-Life Care survey. Staff characteristics included age, gender, professional role, education level, training in palliative care and years working in direct care. Facility characteristics included facility type and availability of palliative care guidelines, palliative care team and palliative care advice. Analyses were conducted using Generalized Estimating Equations, to account for clustering of data at facility level.
Results: The proportion of staff with a mean self-efficacy score >5 was highest in the Netherlands (76.4%), ranged between 55.9% and 60.0% in Belgium, Poland, England and Finland and was lowest in Italy (29.6%). Higher levels of self-efficacy (>5) were associated with: staff over 50 years of age (OR 1.86 95% CI[1.30-2.65]); nurses (compared to care assistants) (1.75 [1.20-2.54]); completion of higher secondary or tertiary education (respectively 2.22 [1.53-3.21] and 3.11 [2.05-4.71]; formal palliative care training (1.71 [1.32-2.21]); working in direct care for over 10 years (1.53 [1.14-2.05]); working in a facility with care provided by onsite nurses and care assistants and offsite physicians (1.86 [1.30-2.65]); and working in a facility where guidelines for palliative care were available (1.39 [1.03-1.88]).
Conclusion: Self-efficacy towards end-of-life communication was most often low in Italy and most often high in the Netherlands. In all countries, low self-efficacy was found relatively often for discussion of prognosis. Palliative care education and guidelines for palliative care could improve the self-efficacy of care staff.
Objective: Radiotherapy is the standard local treatment for patients with painful bone metastases, but effectiveness has primarily been evaluated in trial populations. The aim of this study was to study pain response to palliative radiotherapy in a prospective cohort of unselected patients with bone metastases.
Methods: Patients with painful bone metastases referred to the UMC Utrecht for radiotherapy and enrolled in the PRESENT cohort were included in this study. For all patients, pain response to radiotherapy was assessed, and responders were defined as patients with a complete or partial pain response. Patients with stable pain scores, pain increase, or undetermined response were regarded non-responders. Pain scores obtained at baseline and after 2, 4, 6, 8, and 12 weeks following radiotherapy were obtained. Pain response rates of the total treated population, as well as response rates of the assessable patients, were calculated. To measure the percentage of the remaining time spent with pain relief, the net pain relief (NPR) was calculated by dividing the period of pain relief by the period of survival.
Results: Of the 432 patients enrolled in this study, 262 patients (61%) experienced a complete or partial response. In the 390 assessable patients, this percentage was 67%. Median time to response was 4 weeks (range 1-15 weeks), and the NPR was 64%.
Conclusion: Compared to randomized trial populations, palliative radiotherapy in our unselected patients with bone metastases showed similar pain response rates (61%), with a reasonable duration of this effect.
BACKGROUND: Although it is often recommended that general practitioners (GPs) initiate advance care planning (ACP), little is known about their experiences with ACP. This study aimed to identify GP experiences when conducting ACP conversations with palliative patients, and what factors influence these experiences.
METHODS: Dutch GPs (N = 17) who had participated in a training on timely ACP were interviewed. Data from these interviews were analysed using direct content analysis.
RESULTS: Four themes were identified: ACP and society, the GP's perceived role in ACP, initiating ACP and tailor-made ACP. ACP was regarded as a 'hot topic'. At the same time, a tendency towards a society in which death is not a natural part of life was recognized, making it difficult to start ACP discussions. Interviewees perceived having ACP discussions as a typical GP task. They found initiating and timing ACP easier with proactive patients, e.g. who are anxious of losing capacity, and much more challenging when it concerned patients with COPD or heart failure. Patients still being treated in hospital posed another difficulty, because they often times are not open to discussion. Furthermore, interviewees emphasized that taking into account changing wishes and the fact that not everything can be anticipated, is of the utmost importance. Moreover, when patients are not open to ACP, at a certain point it should be granted that choosing not to know, for example about where things are going or what possible ways of care planning might be, is also a form of autonomy.
CONCLUSIONS: ACP currently is a hot topic, which has favourable as well as unfavourable effects. As GPs experience difficulties in initiating ACP if patients are being treated in the hospital, future research could focus on a multidisciplinary ACP approach and the role of medical specialists in ACP. Furthermore, when starting ACP with palliative patients, we recommend starting with current issues. In doing so, a start can be made with future issues kept in view. Although the tension between ACP's focus on the patient's direction and the right not to know can be difficult, ACP has to be tailored to each individual patient.
BACKGROUND: Decision-making about palliative care for metastatic colorectal cancer (mCRC) consists of many different treatment-related decisions, and there generally is no best treatment option. Decision support systems (DSS), e.g., prognostic calculators, can aid oncologists' decision-making. DSS that contain features tailored to the needs of oncologists are more likely to be implemented in clinical practice. Therefore, our aim is to inventory colorectal cancer specialists' unmet decision support needs.
METHODS: We asked oncologists from the Dutch colorectal cancer group (DCCG), to participate in an online inventory questionnaire on their unmet decision support needs. To get more in-depth insight in required features of the DSS they need, we also conducted semi-structured telephone interviews.
RESULTS: Forty-one oncologists started the inventory questionnaire, and 27 of them completed all items. Of all respondents, 18 were surgeons (44%), 22 were medical oncologists (54%), and 28 (68%) had more than 10 years of experience treating mCRC. In both the inventory questionnaire and interviews, respondents expressed a need for an overarching DSS incorporating multiple treatment options, and presenting both the treatment benefits and harms. Respondents found it relevant for other outcomes, such as cost-effectiveness of treatment or quality of life, to be incorporated in DSS. There was also a wish for DSS incorporating an up-to-date â€œpersonalizedâ€ overview of the ongoing trials for which a specific patient is eligible.
CONCLUSIONS: Experienced oncologists indicate that their treatment advice is currently almost solely based on the available clinical guidelines. They experience a lack of good quality DSS to help them personalize their treatment advice. New tools integrating multiple treatment options and providing a broad range of clinically relevant outcomes are urgently needed to stimulate and safeguard more personalized treatment decision-making.
Background: Advance care planning (ACP) is a crucial element of palliative care. It improves the quality of end-of-life care and reduces aggressive and needless life-prolonging medical interventions. However, little is known about its application in daily practice. This study aims to examine the application of ACP for patients with cancer in general practice.
Methods: We performed a retrospective cohort study in 11 general practices in the Netherlands. Electronic patient records (EPRs) of deceased patients with colorectal or lung cancer were analysed. Data on ACP documentation, correspondence between medical specialist and GP, and health care use in the last year of life were extracted.
Results: Records of 163 deceased patients were analysed. In 74% of the records, one or more ACP items were registered. GPs especially documented patients' preferences for euthanasia (58%), palliative sedation (46%) and preferred place of death (26%). Per patient, GPs received on average six letters from medical specialists. These letters mainly contained information regarding medical treatment and rarely ACP items. In the last year of life, patients contacted the GP over 30 times, and 51% visited the emergency department at least once, of whom 54% in the last month.
Conclusions: Registration of ACP items in GPs' EPRs appeared to be limited. ACP elements were rarely subject of communication between primary and secondary care, which may impact the continuity of patient care during the last year of life. More emphasis on registration of ACP items and better exchange of information regarding patients' preferences are needed.
BACKGROUND: Stating preferences about care beforehand using advance care planning and advance directives has become increasingly common in current medicine. There is still lack of clarity what happens over the course of time in relation to these preferences. We wanted to determine whether the preferences about end-of-life care of a person owning an advance directive stay stable after the experience of a life-event; how often advance directives are altered and discussed with family members and physicians over time.
DESIGN: A longitudinal cohort study with a population consisting of people owning the most common advance directives in the Netherlands, with a follow-up of 6-years from 2005 until 2011. Respondents were recruited using two associations that provided the advance directives, Right to Die-NL (n = 4463) and the Dutch Patient Organisation (n = 1263). Each 1.5 year a questionnaire was sent. We analyzed the relationship between variables using generalized estimated equations.
RESULTS: 96.9-98.1% of the respondents who had experienced a life-event had stable preferences. 89.9-93.7% of Right-to-Die-NL-members who had experienced a life-event didn't make any alterations in their advance directives. During the 6-year course of our study, a minority of both groups didn't discuss their advance directive with anyone (8.7-16.4%), while a majority didn't discuss it with physicians (ranging 58.1-95.1%). Factors related to health, such as deterioration in experienced health, increased the odds to discuss advance directives.
CONCLUSION: Our results largely dispute criticism concerning usability of advance directives due to lack of stability of preferences. Whereas a change in health status and the experience of other life-events were not related to instability in preferences, they did increase the odds of communication about advance directives. Because our results show that the possession of an advance directive does not necessarily result in frequent discussions between patients and caregivers, a more structured approach like advance care planning might be a solution.
In the Netherlands, physician-assisted dying has been legalized since 2002. Currently, an increasing number of Dutch citizens are in favour of a more relaxed interpretation of the law. Based on an ethos of self-determination and autonomy, there is a strong political lobby for the legal right to assisted dying when life is considered to be completed and no longer worth living. Building on previous empirical research, this article provides a critical ethical reflection upon this social issue. In the first part, we discuss the following question: what is the lived experience of older people who consider their lives to be completed and no longer worth living? We describe the reported loss of a sense of autonomy, dignity and independence in the lives of these older people. In the second part, from an ethics of care stance, we analyse the emerging social and political challenges behind the wish to die. Empirically grounded, the authors argue that the debate on 'completed life in old age' should primarily focus not on the question of whether or not to legitimize a self-directed death but on how to build an inclusive society where people may feel less unneeded, useless and marginalized.