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Background There is a wide gap between knowledge about palliative care and its application in everyday clinical practice, affecting many patients in our ageing population. However, changing health care practice is a complex and challenging process. Therefore, the EU funded IMplementation of quality indicators in PAlliative Care sTudy (IMPACT) project aims to develop optimal implementation strategies to improve the organization of palliative care for people with cancer or with dementia in Europe. Methods and design The organization of palliative care in Europe will be mapped to develop and prepare strategies to improve it, and an overview of barriers and incentives regarding successful organizational changes in palliative care will be undertaken. A pre-test with a set of quality indicators (QIs), developed within the project, will be used to identify aspects of the organization of palliative care requiring change in hospitals, nursing homes, hospices, and primary care in five European countries. Based on the results of the pre-test, each setting will be invited to prioritise and improve aspects of their organization that appeared weak. The improvement objective they choose will be tailored to national and setting-specific barriers. Finally, a post-test with the same QIs will determine the effectiveness of the strategies used. An extensive process analysis will be conducted throughout the entire study. Discussion It is expected that the IMPACT project will provide professionals and policy makers useful tools to facilitate effective implementation of high-quality palliative cancer and dementia care in different settings in Europe. [ABSTRACT FROM AUTHOR]

Background: Needs assessment tools can facilitate healthcare professionals in timely recognition of palliative care needs. Despite the increased attention for implementation of such tools, most studies provide little or no attention to the context of implementation. The aim of this study was to explore factors that contribute positively and negatively to timely screening of palliative care needs in advanced chronic heart failure. Methods: Qualitative study using individual interviews and focus groups with healthcare professionals. The data were analysed using a deductive approach. The Consolidated Framework for Implementation Research was used to conceptualise the contextual factors. Results: Twenty nine healthcare professionals with different backgrounds and working in heart failure care in the Southern and Eastern parts of the Netherlands participated. Several factors were perceived to play a role, such as perception and knowledge about palliative care, awareness of palliative care needs in advanced chronic heart failure, perceived difficulty when and how to start palliative care, limited acceptance to treatment boundaries in cardiology, limited communication and collaboration between healthcare professionals, and need for education and increased attention for palliative care in advanced chronic heart failure guidelines. Conclusions: This study clarified critical factors targeting patients, healthcare professionals, organisations to implement a needs assessment tool for timely recognition of palliative care needs in the context of advanced chronic heart failure. A multifaceted implementation strategy is needed which has attention for education, patient empowerment, interdisciplinary collaboration, identification of local champions, chronic heart failure specific guidelines and culture. [ABSTRACT FROM AUTHOR]

Background: Little is known about how GPs determine whether and when patients need palliative care. Little research has been done regarding the assumption underpinning Lynn and Adamson's model that palliative care may start early in the course of the disease. This study was conducted to explore how GPs identify a need for palliative care in patients. Methods: A qualitative interview study was performed among 20 GPs in the Netherlands. Results: GPs reported that a combination of several signals, often subtle and not explicit, made them identify a need for palliative care: signals from patients (increasing care dependency and not recuperating after intercurrent diseases) and signals from relatives or reports from medical specialists. GPs reported differences in how they identified a need for palliative care in cancer patients versus those with other diseases. In cancer patients, the need for palliative care was often relatively clear because of a relatively strict demarcation between the curative and palliative phase. However, in patients with e.g. COPD or in the very old, GPs' awareness of palliative care needs often arises gradually, relatively late in the disease trajectory. GPs consider the diagnosis of a life-threatening illness as a key point in the disease trajectory. However, this does not automatically mean that a patient needs palliative care at that point. Conclusions: GPs recognize a need for palliative care on the basis of various signals. They do not support the idea underlying Lynn and Adamson's model that palliative care always starts early in the course of the disease. [ABSTRACT FROM AUTHOR]

Background: Patients with incurable cancer face complex medical decisions. Their family caregivers play a prominent role in shared decision making processes, but we lack insights into their experiences. In this study, we explored how bereaved family caregivers experienced the shared decision making process. Methods: We performed a qualitative interview study with in-depth interviews analysed with inductive content analysis. We used a purposive sample of bereaved family caregivers (n = 16) of patients with cancer treated in a tertiary university hospital in the Netherlands. Results: Four themes were identified: 1. scenarios of decision making, 2. future death of the patient 3. factors influencing choices when making a treatment decision, and 4. preconditions for the decision making process. Most family caregivers deferred decisions to the patient or physician. Talking about the patient's future death was not preferred by all family caregivers. All family caregivers reported life prolongation as a significant motivator for treatment, while the quality of life was rarely mentioned. A respectful relationship, close involvement, and open communication with healthcare professionals in the palliative setting were valued by many interviewees. Family caregivers' experiences and needs seemed to be overlooked during medical encounters. Conclusions: Family caregivers of deceased patients with cancer mentioned life prolongation, and not quality of life, as the most important treatment aim. They highly valued interactions with the medical oncologist and being involved in the conversations. We advise medical oncologists to take more effort to involve the family caregiver, and more explicitly address quality of life in the consultations. [ABSTRACT FROM AUTHOR]

Background: Patients with incurable cancer face complex medical decisions. Their family caregivers play a prominent role in shared decision making processes, but we lack insights into their experiences. In this study, we explored how bereaved family caregivers experienced the shared decision making process. Methods: We performed a qualitative interview study with in-depth interviews analysed with inductive content analysis. We used a purposive sample of bereaved family caregivers (n = 16) of patients with cancer treated in a tertiary university hospital in the Netherlands. Results: Four themes were identified: 1. scenarios of decision making, 2. future death of the patient 3. factors influencing choices when making a treatment decision, and 4. preconditions for the decision making process. Most family caregivers deferred decisions to the patient or physician. Talking about the patient's future death was not preferred by all family caregivers. All family caregivers reported life prolongation as a significant motivator for treatment, while the quality of life was rarely mentioned. A respectful relationship, close involvement, and open communication with healthcare professionals in the palliative setting were valued by many interviewees. Family caregivers' experiences and needs seemed to be overlooked during medical encounters. Conclusions: Family caregivers of deceased patients with cancer mentioned life prolongation, and not quality of life, as the most important treatment aim. They highly valued interactions with the medical oncologist and being involved in the conversations. We advise medical oncologists to take more effort to involve the family caregiver, and more explicitly address quality of life in the consultations. [ABSTRACT FROM AUTHOR]

Background: Shared decision-making (SDM) is a means of allowing people with dementia to take part in making choices, be autonomous and participate in social activities. Involving them in SDM is an important way of promoting social health. However, including families and dementia residents in decision-making can be challenging for care staff working in nursing homes. The objective of this study was to identify barriers and facilitators regarding the implementation of an SDM framework for care planning in two nursing homes, one in Italy and one in the Netherlands. Methods: Focus group interviews were conducted with healthcare professionals who, after being trained, applied the SDM framework. Content analysis was used to analyze the data. Results: Six months after the feasibility trial, focus group interviews with healthcare professionals (n = 10 in Italy; n = 9 in the Netherlands) were held. We found 6 themes and 15 categories. Within these themes, facilitators and barriers were identified. The categories of team collaboration, communication skills and nursing home policy were found to be facilitators to the implementation process, whereas regulations, lack of funding and of involvement of family caregivers were the main barriers. Family attitudes towards SDM could be both. The main difference between countries concerned the residents' cognitive status that influenced their degree of involvement. Conclusion: Communication skills training for professionals, training of family caregivers, and involvement of the management in the implementation process seem to be crucial factors in successfully implementing SDM in nursing homes, and increasing the involvement of families and dementia residents in decision-making. [ABSTRACT FROM AUTHOR]

Background: The aim of this study was to gain insight into the experience of time of terminal patients with cancer. Experience of time is relevant in palliative care in both policy and practice. On a policy level, the Quality Adjusted Life Year (QALY), the most used outcome measure for cost-effectiveness analysis in healthcare, assumes time to be a linear and additive variable, which is one of the reasons that its applicability in palliative care is questioned. On a practice level, a better understanding of the experience of time of patients with limited time left, could help to recognize if and how these patients can have a more meaningful use of time. The main focus of this study was to discover whether time perception of these patients in their last months of life had changed as compared to earlier periods of time in their lives in good physical health. The pace of time and time dominance (comparison of past, present and future) were investigated. Methods: In several hospices and palliative care units in the Netherlands, twelve semi-structured interviews were conducted with terminal patients with cancer. Results: Time perception at the end of life had changed for most participants. They all lived on a day-to-day basis in the terminal phase, independent of their way of life in the healthy phase. Furthermore, the experienced duration of a day turned out to be very different between patients, but also between days, depending on daily activities. Besides, for most patients for whom the future was the dominant period of time in the healthy phase, the dominant period of time in the terminal phase had become the past. Conclusions: Time perception of terminal patients with cancer differed from the time perception in their relatively healthy phase of life. This suggests that the LY part of the QALY is not comparable for all phases of life. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]