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.

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.

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.

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.

Parental experience at the end-of-life in children with cancer: 'preservation' and 'letting go' in relation to loss.

PURPOSE: For children with incurable cancer death usually is anticipated and preceded by a phase of palliative care. Despite recognition that parents have difficulty adapting to a palliative perspective there is little insight into this process. This study explored, from a parental perspective, the process parents go through when cure is no longer a possibility. PARTICIPANTS AND METHODS: A multicenter study using qualitative research was undertaken during the EoL phase. One-time and repeated open interviews were conducted with 44 parents of 23 children with incurable cancer. RESULTS: Feelings of loss play a prominent role during the EoL phase. Dealing with loss is a process of stepwise relinquishing that becomes manifest in an internal struggle between preservation and letting go. Preservation means that parents try to maintain the child's status quo. Letting go means parents give up their resistance to loss in service of their child's well-being. Although the relative measure of each changes over time, parents have great difficulty making the transition because it implies a change in source of control. A timely completion of this transition positively influences the child's well-being as well as the evaluation of enacted parenthood. CONCLUSION: For parents the essence of the palliative process is not to accept death but to deal with the loss of their child. Although the need to avoid loss and gain control by means of preservation is fully understandable, the study indicated that parents who made the transition to letting go had an increased receptiveness of their child's real situation and needs.