Strengthening the spiritual domain in palliative care through a listening consultation service by spiritual caregivers in Dutch PaTz-groups: an evaluation study.

BACKGROUND: Palliative care should be holistic, but spiritual issues are often overlooked. General practitioners and nurses working together in PaTz-groups (palliative home care groups) consider spiritual issues in palliative care to be relevant, but experience barriers in addressing spiritual issues and finding spiritual caregivers. This study evaluates the feasibility and perceived added value of a listening consultation service by spiritual caregivers in primary palliative care. METHODS: From December 2018 until September 2019, we piloted a listening consultation service in which spiritual caregivers joined 3 PaTz-groups whose members referred patients or their relatives with spiritual care needs to them. Evaluation occurred through (i) monitoring of the implementation, (ii) in-depth interviews with patients (n = 5) and involved spiritual caregivers (n = 5), (iii) short group interviews in 3 PaTz-groups (17 GPs, 10 nurses and 3 palliative consultants), and (iv) questionnaires filled out by the GP after each referral, and by the spiritual caregiver after each consultation. Data was analysed thematically and descriptively. RESULTS: Consultations mostly took place on appointment at the patients home instead of originally intended walk-in consultation hours. Consultations were most often with relatives (72%), followed by patients and relatives together (17%) and patients (11%). Relatives also had more consecutive consultations (mean 4.1 compared to 2.2 for patients). Consultations were on existential and relational issues, loss, grief and identity were main themes. Start-up of the referrals took more time and effort than expected. In time, several GPs of each PaTz-group referred patients to the spiritual caregiver. In general, consultations and joint PaTz-meetings were experienced as of added value. All patients and relatives as well as several GPs and nurses experienced more attention for and awareness of the spiritual domain. Patients and relatives particularly valued professional support of spiritual caregivers, as well as recognition of grief as an normal aspect of life. CONCLUSIONS: If sufficient effort is given to implementation, listening consultation services can be a good method for PaTz-groups to find and cooperate with spiritual caregivers, as well as for integrating spiritual care in primary palliative care. This may strengthen care in the spiritual domain, especially for relatives who are mourning.

Identifying patients who could benefit from palliative care by making use of the general practice information system: the Surprise Question versus the SPICT.

OBJECTIVE: We compared the performance of two tools to help general practitioners (GPs) identify patients in need of palliative care: the Surprise Question (SQ) and the Supportive and Palliative Care Indicators Tool (SPICT). METHODS: Prospective cohort study in two general practices in the Netherlands with a size of 3640 patients. At the start of the study the GPs selected patients by heart using the SQ. The SPICT was translated into a digital search in electronic patient records. The GPs then selected patients from the list thus created. Afterwards the GPs were interviewed about their experiences. The following year a record was kept of all the patients deceased in both practices. We analysed the characteristics of the patients selected and the deceased. We calculated the performance characteristics concerning predicting 1-year mortality. RESULTS: The sensitivity of the SQ was 50%, of the SPICT 57%; the specificity 99% and 98%. When analysing the deceased (n = 36), 10 died relatively suddenly and arguably could not be identified. Leaving out these 10, the sensitivity of the SQ became 69%, of the SPICT 81%. The GPs found the performance of the digital search quite time consuming. CONCLUSION: The SPICT seems to be better in identifying patients in need of palliative care than the SQ. It is also more time consuming than the SQ. However, as the digital search can be performed more easily after it has been done for the first time, initial investments can repay themselves.

Variation in the implementation of PaTz: a method to improve palliative care in general practice - a prospective observational study.

BACKGROUND: PaTz (palliative care at home) is a method to improve palliative care in the primary care setting in the Netherlands. PaTz has three basic principles: (1) local GPs and DNs meet at least six times per year to identify and discuss their patients with a life-threatening illness; (2) these meetings are supervised by a specialist palliative care professional; (3) groups use a palliative care register on which all identified patients are listed. Since the start in 2010, the number of PaTz-groups in the Netherlands has been growing consistently. Although the theory of all PaTz-groups is the same, the practical functioning of PaTz-groups may vary substantially, which may complicate further implementation of PaTz as well as interpretation of effect studies. This study aims to describe the variation in practice of PaTz-groups in the Netherlands. METHOD: In this prospective observational study, ten PaTz-groups logged and described the activities in their meetings as well as the registered and discussed patients and topics of discussions in registration forms for a 1 year follow-up period. In addition, non-participatory observations were performed in all participating groups. Meeting and patient characteristics were analysed using descriptive statistics. Conventional content analysis was performed in the analysis of topic discussions. RESULTS: While the basic principles of PaTz are found in almost every PaTz-group, there is considerable variation in the practice and content of the meetings of different PaTz-groups. Most groups spend little time on other topics than their patients, although the number of patients discussed in a single meeting varies considerably, as well as the time spent on an individual patient. Most registered patients were diagnosed with cancer and patient discussions mainly concerned current affairs and rarely concerned future issues. CONCLUSION: The basic principles are the cornerstone of any PaTz-group. At the same time, the observed variation between PaTz-groups indicates that tailoring a PaTz-group to the needs of its participants is important and may enhance its sustainability. The flexibility of PaTz-groups may also provide opportunity to modify the content and tools used, and improve identification of palliative patients and advance care planning.

Spiritual care at the end of life in the primary care setting: experiences from spiritual caregivers - a mixed methods study.

BACKGROUND: Spiritual care is an important aspect of palliative care. In the Netherlands, general practitioners and district nurses play a leading role in palliative care in the primary care setting. When they are unable to provide adequate spiritual care to their patient, they can refer to spiritual caregivers. This study aimed to provide an overview of the practice of spiritual caregivers in the primary care setting, and to investigate, from their own perspective, the reasons why spiritual caregivers are infrequently involved in palliative care and what is needed to improve this. METHOD: Sequential mixed methods consisting of an online questionnaire with structured and open questions completed by 31 spiritual caregivers, followed by an online focus group with 9 spiritual caregivers, analysed through open coding. RESULTS: Spiritual caregivers provide care for existential, relational and religious issues, and the emotions related to these issues. Aspects of spiritual care in practice include helping patients find meaning, acceptance or reconciliation, paying attention to the spiritual issues of relatives of the patient, and helping them all to say farewell. Besides spiritual issues, spiritual caregivers also discuss topics related to medical care with patients and relatives, such as treatment wishes and options. Spiritual caregivers also mentioned barriers and facilitators for the provision of spiritual care, such as communication with other healthcare providers, having a relationship of trust and structural funding.. In the online focus group, local multidisciplinary meetings were suggested as ideal opportunities to familiarize other healthcare providers with spirituality and promote spiritual caregivers' services. Also, structural funding for spiritual caregivers in the primary care setting should be organized. CONCLUSION: Spiritual caregivers provide broad spiritual care at the end of life, and discuss many different topics beside spiritual issues with patients in the palliative phase, supporting them when making medical end-of-life decisions. Spiritual care in the primary care setting may be improved by better cooperation between spiritual caregiver and other healthcare providers, through improved education in spiritual care and better promotion of spiritual caregivers' services.

The association between PaTz and improved palliative care in the primary care setting: a cross-sectional survey.

BACKGROUND: The PaTz-method (acronym for Palliatieve Thuiszorg, palliative care at home) is perceived to improve coordination, continuity and communication in palliative care in the Netherlands. Although important for further implementation, research showing a clear effect of PaTz on patient-related outcomes is scarce. This study aimed to examine perceived barriers and added value of PaTz and its association with improved care outcomes. METHODS: Ninety-eight Dutch general practitioners and 229 Dutch district nurses filled out an online questionnaire with structured questions on added value and barrier perception of PaTz-participation, and palliative care provided to their most recently deceased patient, distributed online by Dutch medical and nurses' associations. Data from PaTz-participants and non-participants was compared using Chi-square tests, independent t-tests and logistic regression analyses. RESULTS: While both PaTz-participants and non-participants perceived PaTz to be beneficial for knowledge collaboration, coordination and continuity of care, time (or lack thereof) is considered the most important barrier for participation. PaTz-participation is associated with discussing five or more end-of-life topics with patients (OR = 3.16) and with another healthcare provider (OR = 2.55). PaTz-participation is also associated with discussing palliative sedation (OR = 3.85) and euthanasia (OR = 2.97) with another healthcare provider. Significant associations with other care outcomes were not found. CONCLUSIONS: General practitioners and district nurses feel that participating in a PaTz-group has benefits, but perceive various barriers for participation. While participating in a PaTz-group is associated with improved communication between healthcare providers and with patients, the effect on patient outcomes remains unclear. To stimulate further implementation, future research should focus on the effect of PaTz on tangible care characteristics and how to facilitate participation and remove barriers.

Continuity of GP care after the last hospitalization for patients who died from cancer, chronic obstructive pulmonary disease or heart failure: a retrospective cohort study using administrative data.

BACKGROUND: Discharge from hospital to home can be a stressful experience for patients and carers. Contact with the GP is important to ensure continuity of care. OBJECTIVES: To investigate timing of contact with the GP and locum after the last hospitalization in the last year of life and to investigate patient and care characteristics related to contact with the GP within 2 days after discharge. METHODS: Health insurance data were combined with data from Statistics Netherlands on patients who mainly received care at home in the last 4 months of life. Patients who died from cancer (n = 3014), chronic obstructive pulmonary disease (COPD, n = 195) or heart failure (n = 171) were compared. RESULTS: First contact after hospital discharge was within 2 days for 51.7% of patients and within a week for 77.8% of patients. Patients who died from COPD or heart failure had contact less often than patients with cancer. Characteristics related to having contact within 2 days after discharge were older age, cause of death cancer, home death, timing of last hospitalization closer to death and contact with a locum in the week after discharge. CONCLUSION: Results may indicate that the GP is likely to visit patients with more care needs sooner. This would be in accordance with the finding that contact with the GP was more likely after a hospitalization closer to death and that contact within 2 days was related to contact with a locum within a week after discharge. Proactive care is necessary. This is a joint responsibility of GPs and medical specialists.

Improving palliative care provision in primary care: a pre- and post-survey evaluation among PaTz groups.

BACKGROUND: In PaTz (PAlliatieve Thuis Zorg, palliative care at home), modelled after the Gold Standards Framework, GPs and community nurses meet on a regular basis to identify patients with palliative care needs (the PaTz register), and to discuss care for these patients. AIM: To study the effects of the implementation of PaTz, and provide additional analyses on two important elements: the PaTz register and patient discussions. DESIGN AND SETTING: A pre- and post-evaluation among Dutch GPs (n = 195 before the start of PaTz; n = 166, 1 year after the start of PaTz). The GPs also provided data on recently deceased patients (n = 460 before the start of PaTz; n = 305 14 months after the start of PaTz). METHOD: GPs from all 37 PaTz groups filled in questionnaires. Pre- and post-test differences were analysed using multilevel analyses to adjust for PaTz group. RESULTS: Identification of patients with palliative care needs was done systematically for more patients after implementation of PaTz compared with before (54.3% versus 17.6%). After implementation, 64.8% of deceased patients had been included on the PaTz register. For these patients, when compared with patients not included on the PaTz register, preferred place of death was more likely to be known (88.1% of patients not on the register and 97.3% of deceased patients included on the register), GPs were more likely to have considered a possible death sooner (>1 month before death: 53.0% and 80.2%), and conversations on life expectancy, physical complaints, existential issues, and possibilities of care occurred more often (60.8% and 81.3%; 68.6% and 86.1%; 22.5% and 34.2%; 60.8% and 84.0%, respectively). CONCLUSIONS: Implementation of PaTz improved systematic identification of palliative care patients within the GP practice. Use of the PaTz register has added value.

Writing information transfers for out-of-hours palliative care: a controlled trial among GPs.

OBJECTIVE: The aim was to evaluate the effect of the implementation of an information handover form regarding patients receiving palliative care. Outcome was the information available for the out-of-hours GP co-operative. DESIGN: We conducted a controlled trial. SETTING: All GPs in Amsterdam, The Netherlands. INTERVENTION: The experimental group (N = 240) received an information handover form and an invitation for a one-hour training, the control group (N = 186) did not receive a handover form or training. We studied contacts with the GP co-operative concerning patients in palliative care for the presence and quality of information transferred by the patient's own GP. MAIN OUTCOME MEASURES: Proportion of contacts in which information was available and proportion of adequate information transfer. RESULTS: Overall information was transferred by the GPs in 179 of the 772 first palliative contacts (23.2%). The number of contacts in the experimental group in which information was available increased significantly after intervention from 21% to 30%, compared to a decrease from 23% to 19% in the control group. The training had no additional effect. The content of the transferred information was adequate in 61.5%. There was no significant difference in the quality of the content between the groups. CONCLUSION: The introduction of a handover form resulted in a moderate increase of information transfers to the GP co-operative. However, the total percentage of contacts in which this information was present remained rather low. GP co-operatives should develop additional policies to improve information transfer. Key points The out-of-hours period is potentially problematic for the delivery of optimal palliative care, often due to inadequate information transfer. Introduction of a handover form resulted in a moderate increase of transferred information. The percentage of palliative contacts remained low in cases where information was available. Adequate information was transferred in more than half of the cases.

How could hospitalisations at the end of life have been avoided? A qualitative retrospective study of the perspectives of general practitioners, nurses and family carers.

BACKGROUND: Although many patients prefer to stay and die at home at the end of life, many are hospitalised. Little is known about how to avoid hospitalisations for patients living at home. AIM: To describe how hospitalisation at the end of life can be avoided, from the perspective of the GPs, nurses and family carers. METHOD: A qualitative design with face-to-face interviews was used. Taking 30 cases of patients who died non-suddenly, 26 GPs, 15 nurses and 18 family carers were interviewed in depth. Of the 30 patients, 20 were hospitalised and 10 were not hospitalised in the last three months of life. RESULTS: Five key themes that could help avoid hospitalisation at the end of life emerged from the interviews. The key themes were: 1) marking the approach of death, and shifting the mindset; 2) being able to provide acute treatment and care at home; 3) anticipatory discussions and interventions to deal with expected severe problems; 4) guiding and monitoring the patient and family in a holistic way through the illness trajectory; 5) continuity of treatment and care at home. If these five key themes are adopted in an interrelated way, this could help avoid hospitalisations, according to GPs, nurses and family carers. CONCLUSIONS: The five key themes described in this study can be seen as strategies that could help in avoiding hospitalisation at the end of life. It is recommended that for all patients residing at home, GPs and community nurses work together as a team from the moment that it is marked that death is approaching up to the end of life.

Effectiveness of the palliative care 'Availability, Current issues and Anticipation' (ACA) communication training programme for general practitioners on patient outcomes: a controlled trial.

BACKGROUND: Although communicating effectively with patients receiving palliative care can be difficult, it may contribute to maintaining or enhancing patients' quality of life. Little is known about the effect of training general practitioners in palliative care-specific communication. We hypothesized that palliative care patients of general practitioners exposed to the 'Availability, Current issues and Anticipation' communication training programme would report better outcomes than patients of control general practitioners. AIM: To evaluate the effectiveness of the Availability, Current issues and Anticipation training programme for general practitioners on patient-reported outcomes. DESIGN: In a controlled trial, general practitioners followed the Availability, Current issues and Anticipation programme or were part of the control group. Patients receiving palliative care of participating general practitioners completed the Palliative Care Outcome Scale, the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative, the Rest & Peace Scale, the Patient Satisfaction Questionnaire-III and the Availability, Current issues and Anticipation Scale, at baseline and 12 months follow-up. We analysed differences between groups using linear mixed models. TRIAL REGISTRATION: ISRCTN56722368. SETTING/PARTICIPANTS: General practitioners who attended a 2-year Palliative Care Training Course in the Netherlands. RESULTS: Questionnaire data were available for 145 patients (89 in intervention and 56 in control group). We found no significant differences over time between the intervention and control groups in any of the five outcome measures. Ceiling effects were observed for the Rest & Peace Scale, Patient Satisfaction Questionnaire-III and Availability, Current issues and Anticipation Scale. CONCLUSION: General practitioner participation in the Availability, Current issues and Anticipation training programme did not have a measurable effect on any of the outcomes investigated. Patients reported high levels of satisfaction with general practitioner care, regardless of group assignment. Future research might focus on general practitioners without special interest in palliative care.

Burden for family carers at the end of life; a mixed-method study of the perspectives of family carers and GPs.

BACKGROUND: Since many patients spend most of the time at home at the end of life, this may affect the burden for family carers and constitute a risk factor for the patients' hospitalisation. This study aimed to explore family carers' burden in the final three months of the patient's life, from the perspective of both carers and general practitioners (GPs), and to assess whether family burden, as defined by the GP, is associated with hospitalisation. METHODS: A cross-sectional nationwide survey among GPs and family carers was performed. Participants were 194 GPs and 74 family carers of patients who died non-suddenly. Additionally, in-depth interviews were conducted with 18 family carers. For the quantitative analyses descriptive statistics, weighted Kappa and multivariate logistic regression analysis was performed. For the qualitative part thematic analysis was conducted. RESULTS: The proportion of family carers experiencing a fairly heavy or severe burden increased significantly from 32% (second and third months before death) to 66% (one week before death). Most carers (95%) felt an emotional burden and 29% felt a physical burden in the final week. Three-quarters of carers did not perceive their burden as a problem because caring often felt rewarding. No significant association was found between the characteristics of family caregivers or professional care and the degree of family caregiver burden. Also, there was no significant evidence that patients of family carers for whom the GP assessed a fairly heavy to severe burden, were more likely to be hospitalised. CONCLUSIONS: The different overall assessment of family carers' burden between GPs and family carers and the increasing emotional and physical burden of family carers towards the end constitute relevant information for GPs that will help them understand and anticipate carers' personal needs.

General practitioners' perspectives on the avoidability of hospitalizations at the end of life: A mixed-method study.

BACKGROUND: Many patients are hospitalized in the last months of life. Little is known about the avoidability of these hospitalizations. AIM: To explore whether and how hospitalizations could have been avoided in the last 3 months of life and barriers to avoid this, according to general practitioners in the Netherlands. DESIGN: Sequential mixed-method design, starting with a cross-sectional nationwide questionnaire study among general practitioners, followed by in-depth interviews. SETTING/PARTICIPANTS: General practitioners were asked about their most recent patient who died non-suddenly and who was hospitalized in the last 3 months of life. Additionally, 18 of these general practitioners were interviewed in depth about the situation surrounding hospitalization. RESULTS: According to 24% of 319 general practitioners, the last hospitalization in the final 3 months of their patient's life could have been avoided. Of all avoidable hospitalizations, 46% could have been avoided by proactive communication with the patient, 36% by more communication between professionals around hospitalization, 28% by additional care and treatment at home, and 10% by patient and family support. In the in-depth interviews, general practitioners confirmed the aforementioned strategies, but also mentioned various barriers in daily practice, such as the timing of proactive communication with the patient, incompleteness of information transfer in acute situations, and the lack of awareness among patients and family that death was near. CONCLUSION: A proactive approach could avoid some of the hospitalizations at the end of life, in the opinion of general practitioners. More insight is needed into communication and psychological barriers for timely discussions about end-of-life issues.

Effectiveness of the 'availability, current issues and anticipation' (ACA) training programme for general practice trainees on communication with palliative care patients: a controlled trial.

OBJECTIVE: This study aimed to evaluate the effectiveness of a new palliative care 'availability, current issues and anticipation' (ACA) training programme to improve communication skills of general practice trainees (GPTs). METHODS: In a controlled trial among third-year GPTs, we videotaped one 20-min consultation between each GPT and a simulated palliative care patient at baseline and at six months follow-up. We measured the number of issues discussed and the quality of communication skills and analysed between-group differences using linear mixed models and logistic regression. RESULTS: Fifty-four GPTs were assigned to the intervention and 64 to the control group. We found no effect of the programme on the number of issues discussed or on the quality of GPT communicative behaviour. GPTs infrequently addressed 'spiritual/existential issues' and 'unfinished business'. In a selection of the consultations, simulated patients brought up more issues than the GPTs did. CONCLUSION: The ACA training programme was not effective in the way it was carried out and evaluated in this trial. PRACTICE IMPLICATIONS: The ACA programme should focus on the issues that scored low in this trial. Future research on GPT-patient communication in palliative care should consider using real patients in a series of consultations to evaluate effectiveness.

[General practitioner and palliative sedation]. / Huisarts en palliatieve sedatie.

Recent publications in Dutch national newspapers on palliative sedation have raised concerns about its use in general practice. There is now evidence that there is no significant increase in the incidence of palliative sedation. Euthanasia requests were pending in 20.8% of the cases in which palliative sedation was performed, but the general practitioners could clearly justify why they made this choice. This is important because it indicates that they are aware of a sharp distinction between euthanasia and palliative sedation. Although the decision to perform palliative sedation was discussed with almost all cancer patients, patient involvement was less present in non-cancer conditions. This may be related to different disease trajectories, but it also indicates that attention should be devoted to earlier identification of patients in need of palliative care. The findings confirm that the practice of palliative sedation by general practitioners largely reflects the recommendations of the Dutch National Guideline on Palliative Sedation.

PaTz groups for primary palliative care: reinventing cooperation between general practitioners and district nurses in palliative care: an evaluation study combining data from focus groups and a questionnaire.

BACKGROUND: PaTz (an acronym for 'PAlliatieve Thuis Zorg'; palliative care at home) is an intervention to improve palliative care provision and strengthen the generalist knowledge of palliative care. In PaTz general practitioners and district nurses meet on a regular basis to identify patients with palliative care needs and to discuss care for these patients. This study explores experiences with regard to collaboration between general practitioners and district nurses, and perceived benefits of and barriers for implementation of PaTz. METHODS: This study is conducted within the primary care setting. Participants were 24 general practitioners who filled in a questionnaire, and seven general practitioners, five district nurses and two palliative care consultants who attended one of two focus groups. RESULTS: PaTz led to improved collaboration. Participants felt informational and emotional support from other PaTz participants. Also they felt that continuity of care was enhanced by PaTz. Practical recommendations for implementation were: meetings every 6 to 8 weeks, regular attendance from both general practitioners and district nurses, presence of a palliative care consultant, and a strong chairman. CONCLUSIONS: PaTz is successful in enhancing collaboration in primary palliative care and easy to implement. Participants felt it improved continuity of care and knowledge on palliative care. Further research is needed to investigate whether patient and carer outcomes improve.

Reasons for hospitalisation at the end of life: differences between cancer and non-cancer patients.

PURPOSE: Many patients are hospitalised during the final phase of life, even though most prefer to receive care at home until the end. This study aimed to explore the reasons and characteristics of hospitalisation in the final 3 months of life for patients who died non-suddenly, with a comparison between cancer patients and non-cancer patients. METHODS: This study used a nationwide retrospective cross-sectional survey among Dutch general practitioners. RESULTS: Of the 317 hospitalised patients, 65 % had cancer. Most common reasons for hospitalisation in the final 3 months of life were respiratory symptoms (31 %), digestive symptoms (17 %), and cardiovascular symptoms (17 %). Seventy-three percent of patients experienced an acute episode before hospitalisation, and for 46 % of patients, their own GP initiated the hospitalisation. Compared to non-cancer patients, cancer patients were significantly more likely to be aged less than 80 (81 versus 46 %), were more likely to be hospitalised because of digestive symptoms (22 versus 7 %), were less likely to have a curative treatment goal before the last hospitalisation (6 versus 22 %) and were less likely to die in hospital (22 versus 49 %). CONCLUSIONS: Respiratory problems were the most common reasons for hospitalisation in the group of patients as a whole. Digestive problems were a frequent reason for hospitalisation in cancer patients and cardiovascular symptoms in non-cancer patients. Hospitalisation can therefore be anticipated by monitoring these relatively common symptoms. Also, timely communication with the patient is recommended about their preferences for hospital or home treatment in the case of an acute episode.

Effectiveness of the ACA (Availability, Current issues and Anticipation) training programme on GP-patient communication in palliative care; a controlled trial.

BACKGROUND: Communicating effectively with palliative care patients has been acknowledged to be somewhat difficult, but little is known about the effect that training general practitioners (GPs) in specific elements of communication in palliative care might have. We hypothesized that GPs exposed to a new training programme in GP-patient communication in palliative care focusing on availability of the GP for the patient, current issues the GP should discuss with the patient and anticipation by the GP of various scenarios (ACA), would discuss more issues and become more skilled in their communication with palliative care patients. METHODS: In this controlled trial among GPs who attended a two-year Palliative Care Peer Group Training Course in the Netherlands only intervention GPs received the ACA training programme. To evaluate the effect of the programme a content analysis (Roter Interaction Analysis System) was performed of one videotaped 15-minute consultation of each GP with a simulated palliative care patient conducted at baseline, and one at 12 months follow-up. Both how the GP communicated with the patient ('availability') and the number of current and anticipated issues the GP discussed with the patient were measured quantitatively. We used linear mixed models and logistic regression models to evaluate between-group differences over time. RESULTS: Sixty-two GPs were assigned to the intervention and 64 to the control group. We found no effect of the ACA training programme on how the GPs communicated with the patient or on the number of issues discussed by GPs with the patient. The total number of issues discussed by the GPs was eight out of 13 before and after the training in both groups. CONCLUSION: The ACA training programme did not influence how the GPs communicated with the simulated palliative care patient or the number of issues discussed by the GPs in this trial. Further research should evaluate whether this training programme is effective for GPs who do not have a special interest in palliative care and whether studies using outcomes at patient level can provide more insight into the effectiveness of the ACA training programme. TRIAL REGISTRATION: Current Controlled Trials ISRCTN56722368.

GPs' recognition of death in the foreseeable future and diagnosis of a fatal condition: a national survey.

BACKGROUND: Nowadays, palliative care is considered as a care continuum that may start early in the course of the disease. In order to address the evolving needs of patients for palliative care in time, GPs should be aware in good time of the diagnosis and of the imminence of death. The aim of the study was to gain insight into how long before a non-sudden death the diagnosis of the disease ultimately leading to death is made and on what kind of information the diagnosis is based. In addition, we aimed to explore when, and based on what kind of information, GPs become aware that death of a patient will be in the foreseeable future. METHODS: A written questionnaire focusing on the GPs' experiences with their last patient who died non-suddenly was sent to a random representative sample of 850 GPs in the Netherlands. RESULTS: The data were analysed of the 297 GPs who responded. 76% of the reported cases were cancer patients and 24% were patients with another non-sudden cause of death. The diagnosis was made only in the last week of life for 15% of the non-cancer patients and 1% of the patients with cancer. GPs were most likely to have been informed of the diagnosis by the medical specialist, although particularly in the case of non-cancer patients GPs also relied on their own assessment of the diagnosis or on other information sources.The GP remained unaware that the patient would die in the foreseeable future until the last week of life in 26% of the non-cancer group, while this was the case for only 6% of the cancer patients. GP's awareness was most likely to be based on the GP's own observations of problems and/or symptoms. CONCLUSIONS: The GP often only becomes aware of a fatal diagnosis and of death in the foreseeable future at a late stage in the disease trajectory, particularly in the case of non-cancer patients. It can be assumed that if the diagnosis and the nearing death are only recognised at a late stage, palliative care is either started at a very late stage or not at all.

End-of-life hospital referrals by out-of-hours general practitioners: a retrospective chart study.

BACKGROUND: Many patients are transferred from home to hospital during the final phase of life and the majority die in hospital. The aim of the study is to explore hospital referrals of palliative care patients for whom an out-of-hours general practitioner was called. METHODS: A retrospective descriptive chart study was conducted covering a one-year period (1/Nov/2005 to 1/Nov/2006) in all eight out-of-hours GP co-operatives in the Amsterdam region (Netherlands). All symptoms, sociodemographic and medical characteristics were recorded in 529 charts for palliative care patients. Multivariate logistic regression analysis was performed to identify the variables associated with hospital referrals at the end of life. RESULTS: In all, 13% of all palliative care patients for whom an out-of-hours general practitioner was called were referred to hospital. Palliative care patients with cancer (OR 5,1), cardiovascular problems (OR 8,3), digestive problems (OR 2,5) and endocrine, metabolic and nutritional (EMN) problems (OR 2,5) had a significantly higher chance of being referred. Patients receiving professional nursing care (OR 0,2) and patients for whom their own general practitioner had transferred information to the out-of-hours cooperative (OR 0,4) had a significantly lower chance of hospital referral. The most frequent reasons for hospital referral, as noted by the out-of-hours general practitioner, were digestive (30%), EMN (19%) and respiratory (17%) problems. CONCLUSION: Whilst acknowledging that an out-of-hours hospital referral can be the most desirable option in some situations, this study provides suggestions for avoiding undesirable hospital referrals by out-of-hours general practitioners at the end of life. These include anticipating digestive, EMN, respiratory and cardiovascular symptoms in palliative care patients.

Out-of-hours palliative care provided by GP co-operatives in the Netherlands: a focus group study.

BACKGROUND: In the Netherlands, out-of-hours primary care has been re-organized from small on-call rota groups to large-scale GP co-operatives. However, out-of-hours palliative care is an area of concern. According to studies in the UK, the transfer of information about terminally ill patients to GP co-operatives seems to be poor, resulting in care that is often inadequate. Our aim was to investigate the experiences of GPs in the Netherlands about the quality of out-of-hours palliative care provided by GP co-operatives, and to identify elements of care that might need to be improved. SETTING: General practice. DESIGN: Qualitative study, using three focus group discussions, analysed in a qualitative descriptive approach. RESULTS: GPs participating in the focus groups, considered the quality of out-of-hours palliative care that is provided by GP co-operatives to be meagre. The service provided by the co-operatives was designed for acute medical problems, rather than for palliative care needs. The GPs reported three major problems: ( 1 ) lack of adequate information at the GP out-of-hours service; ( 2 ) lack of anticipatory care during office hours; and ( 3 ) absence of a palliative care policy in the GP co-operatives. CONCLUSIONS: Although GP co-operatives are capable of providing continuity in palliative care, improvements could be achieved if GPs and GP co-operatives address the problems mentioned above.