We propose elements of the patients' health status (e.g. a progressive, life-threatening disease with no possibility of obtaining remission or stabilisation, or modifying the course of the illness) and the care delivered to them (e.g. a holistic interdisciplinary approach that focuses on supporting the quality of the end of life) to be included in the definition of a palliative care patient. We also suggest considering the patients' readiness to accept palliative care and a vision of palliative care shared by the patient and all caregivers involved as potentially important elements in this definition.

BackgroundAccording to the World Health Organization (WHO) definition, palliative care should be initiated in an early phase and not be restricted to terminal care. In the literature, no validated tools predicting the optimal timing for initiating palliative care have been determined.

BackgroundAlthough 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.MethodsDutch GPs (N = 17) who had participated in a training on timely ACP were interviewed. Data from these interviews were analysed using direct content analysis.ResultsFour 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.ConclusionsACP 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.Electronic supplementary materialThe online version of this article (10.1186/s12875-018-0868-5) contains supplementary material, which is available to authorized users.

BackgroundMost patients with advanced cancer, debilitating COPD or chronic heart failure (CHF) live at home. General practitioners (GPs) asked for guidance in how to recognize patients in need of palliative care in a timely way and to structure anticipatory care. For that reason, we developed a training for GPs in identifying patients in need of palliative care and in structuring anticipatory palliative care planning and studied its effect on out-of-hours contacts, contacts with their own GP, hospitalizations and place of death.MethodsWe performed a cluster randomised controlled trial. GPs in the intervention group were trained in identifying patients in need of palliative care and anticipatory care planning. Next, for each identified patient, they were offered a coaching session with a specialist in palliative care to fine-tune a structured care plan. The GPs in the control group did not receive training or coaching, and were asked to provide care as usual.After one year, characteristics of patients deceased of cancer, COPD or CHF in both study groups were compared with mixed effects models for out-of-hours contacts (primary outcome), contacts with their own GP, place of death and hospitalizations in the last months of their life (secondary outcomes). As a post-hoc analysis, of identified patients (of the intervention GPs) these figures were compared to all other deceased patients, who had not been identified as in need of palliative care.ResultsWe did not find any differences between the intervention and control group. Yet, only half of the trained GPs (28) identified patients (52), which was only 24 % of the deceased patients. Those identified patients had significantly more contacts with their own GP (B 4.5218; p <0.0006), were less often hospitalized (OR 0.485; p 0.0437) more often died at home (OR 2.126; p 0.0572) and less often died in the hospital (OR 0.380; p 0.0449).ConclusionsAlthough we did not find differences between the intervention and control group, we found in a post-hoc analysis that those patients that had been identified as in need of palliative care had more contacts with their GP, less hospitalizations, and more often died at home. We recommend future controlled studies that try to further increase identification of patients eligible for anticipatory palliative care.The Netherlands National Trial Register: NTR2815 date 07-04-2010

BackgroundPalliative care is mainly restricted to terminal care. General practitioners (GPs) are not trained to early identify palliative patients with cancer, COPD or heart failure. With the help of the RADboud indicators for PAlliative Care needs (RADPAC), we trained GPs to identify patients’ needs and to make a proactive care plan. They were also able to join two role-plays where they discussed the patient’s future, and consulted a palliative care consultant to fine-tune the care plan. We evaluated the programme with the GPs and consultants and noted its impact on their daily practice.MethodsTwo years after they had participated in the programme, we held semi-structured interviews with the GPs and a focus group interview with the consultants and performed a thematic content analysis.ResultsSix consultants and nine GPs participated in the programme. Most GPs and consultants mentioned positive changes in the thinking or acting of GPs regarding early palliative care. A number continued to use the tool to identify patients; most of the others noted they had internalised the indicators. Although half of them still considered discussing end-of-life aspects difficult, particularly in patients with organ failure, the others were more easily able to discuss the future with their palliative patients.ConclusionAlthough most GPs and consultants were positive about the training programme and applying it in daily practice, we conclude that in future programmes, more attention needs to paid to timely identification of palliative patients with COPD or CHF and how to discuss the future with them.

BackgroundAccording to the Word Health Organization, patients who can benefit from palliative care should be identified earlier to enable proactive palliative care. Up to now, this is not common practice and has hardly been addressed in scientific literature. Still, palliative care is limited to the terminal phase and restricted to patients with cancer. Therefore, we trained general practitioners (GPs) in identifying palliative patients in an earlier phase of their disease trajectory and in delivering structured proactive palliative care. The aim of our study is to determine if this training, in combination with consulting an expert in palliative care regarding each palliative patient's tailored care plan, can improve different aspects of the quality of the remaining life of patients with severe chronic diseases such as chronic obstructive pulmonary disease, congestive heart failure and cancer.Methods/DesignA two-armed randomized controlled trial was performed. As outcome variables we studied: place of death, number of hospital admissions and number of GP out of hours contacts.DiscussionWe expect that this study will increase the number of identified palliative care patients and improve different aspects of quality of palliative care. This is of importance to improve palliative care for patients with COPD, CHF and cancer and their informal caregivers, and to empower the GP. The study protocol is described and possible strengths and weaknesses and possible consequences have been outlined.Trial RegistrationThe Netherlands National Trial Register: NTR2815

NTR2815; post results.

The experts agreed to the 14 main elements of spiritual care in palliative home care. There were no differences in this regard between the stakeholder groups. This study provides a first step towards the development of an interdisciplinary spiritual care model in palliative home care.