BackgroundPatients are increasingly expected and asked to be involved in health care decisions. In this decision-making process, preferences for participation are important. In this systematic review we aim to provide an overview the literature related to the congruence between patients’ preferences and their perceived participation in medical decision-making. We also explore the direction of mismatched and outline factors associated with congruence.MethodsA systematic review was performed on patient participation in medical decision-making. Medline, PsycINFO, CINAHL, EMBASE and the Cochrane Library databases up to September 2012, were searched and all studies were rigorously critically appraised. In total 44 papers were included, they sampled contained 52 different patient samples.ResultsMean of congruence between preference for and perceived participation in decision-making was 60% (49 and 70 representing 25th and 75th percentiles). If no congruence was found, of 36 patient samples most patients preferred more involvement and of 9 patient samples most patients preferred less involvement. Factors associated with preferences the most investigated were age and educational level. Younger patients preferred more often an active or shared role as did higher educated patients.ConclusionThis review suggests that a similar approach to all patients is not likely to meet patients’ wishes, since preferences for participation vary among patients. Health care professionals should be sensitive to patients individual preferences and communicate about patients’ participation wishes on a regular basis during their illness trajectory.

BackgroundPatients' preferences and expectations should be taken into account in treatment decision making in the last phase of life. Shared decision making (SDM) is regarded as a way to give the patient a central role in decision making. Little is known about how SDM is used in clinical practice in advanced cancer care.ObjectiveTo examine whether and how the steps of SDM can be recognized in decision making about second‐ and third‐line chemotherapy.MethodsFourteen advanced cancer patients were followed over time using face‐to‐face in‐depth interviews and observations of the patients' out‐clinic visits. Interviews and outpatient clinic visits in which treatment options were discussed or decisions made were transcribed verbatim and analysed using open coding.ResultsPatients were satisfied with the decision‐making process, but the steps of SDM were barely seen in daily practice. The creation of awareness about available treatment options by physicians was limited and not discussed in an equal way. Patients' wishes and concerns were not explicitly assessed, which led to different expectations about improved survival from subsequent lines of chemotherapy.ConclusionTo reach SDM in daily practice, physicians should create awareness of all treatment options, including forgoing treatment, and communicate the risk of benefit and harm. Open and honest communication is needed in which patients' expectations and concerns are discussed. Through this, the difficult process of decision making in the last phase of life can be facilitated and the focus on the best care for the specific patient is strengthened.

PurposePatients are often encouraged to participate in treatment decision-making. Most studies on this subject focus on choosing between different curative treatment types. In the last phase of life treatment decisions differ as they often put more emphasis on weighing quantity against quality of life, such as whether or not to start treatment aimed at life prolongation but with the possibility of side effects. This study aimed to obtain insight into cancer patients' preferences and the reasons for patients' preferred role in treatment decision-making at the end of life.Methods28 advanced cancer patients were included at the start of their first line treatment. In-depth interviews were held prior to upcoming treatment decisions whether or not to start a life prolonging treatment. The Control Preference Scale was used to start discussing the extent and type of influence patients wanted to have concerning upcoming treatment decision-making. Interviews were audio taped and transcribed.ResultsAll patients wanted their physician to participate in the treatment decision-making process. The extent to which patients themselves preferred to participate seemed to depend on how patients saw their own role or assessed their own capabilities for participating in treatment decision-making. Patients foresaw a shift in the preferred level of participation to a more active role depending in the later phase of illness when life prolongation would become more limited and quality of life would become more important.ConclusionPatients vary in how much involvement they would like to have in upcoming treatment decision-making. Individual patients' preferences may change in the course of the illness, with a shift to more active participation in the later phases. Communication about patients' expectations, wishes and preferences for participation in upcoming treatment decisions is of great importance. An approach in which these topics are openly discussed would be beneficial.

Social consequences of advanced cancer are substantial. There appears to be a great risk of social isolation in which responses from social relations play an important role. Empowering patients and informal caregivers to discuss their experienced social consequences is beneficial. Creating awareness among healthcare professionals is essential as they provide social support and anticipate on social problems. Finally, educating social relations regarding the impact of advanced cancer and effective support methods may empower social support systems and reduce feelings of isolation.

Background: In recent years there has been increasing attention for the prevalence and prevention of burnout among healthcare professionals. There is unclarity about prevalence of burnout in healthcare professionals providing palliative care and little is known about effective interventions in this area. Aim: To investigate the prevalence of (symptoms of) burnout in healthcare professionals providing palliative care and what interventions may reduce symptoms of burnout in this population. Design: A systematic literature review based on criteria of the PRISMA statement was performed on prevalence of burnout in healthcare professionals providing palliative care and interventions aimed at preventing burnout. Data sources: PubMed, PsycInfo and Cinahl were searched for studies published from 2008 to 2020. Quality of the studies was assessed using the method of Hawkers for systematically reviewing research. Results: In total 59 studies were included. Burnout among healthcare professionals providing palliative care ranged from 3% to 66%. No major differences in prevalence were found between nurses and physicians. Healthcare professionals providing palliative care in general settings experience more symptoms of burnout than those in specialised palliative care settings. Ten studies reported on the effects of interventions aimed at preventing burnout. Reduction of one or more symptoms of burnout after the intervention was reported in six studies which were aimed at learning meditation, improving communication skills, peer-coaching and art-therapy based supervision. Conclusion: The range of burnout among healthcare professionals providing palliative care varies widely. Interventions based on meditation, communication training, peer-coaching and art-therapy based supervision have positive effects but long-term outcomes are not known yet.