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

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

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

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. This study used a nationwide retrospective cross-sectional survey among Dutch general practitioners. 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 %). 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