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Background Ensuring patient rights is an extension of applying human rights principles to health care. A critical examination of how the notion of patient rights is perceived and enacted by various actors through critical discourse analysis (CDA) can help understand the impediments to its realization in practice. Methods We studied the discourses and discursive practices on patient rights in subnational policies and in ten health facilities in southern Karnataka, India. We conducted interviews (78), focus group discussions (3) with care-seeking individuals, care-providers, health care administrators and public health officials. We also conducted participant observation in selected health facilities and examined subnational policy documents of Karnataka pertaining to patient rights. We analyzed the qualitative data for major and minor themes. Results Patient rights discourses were not based upon human rights notions. In the context of neoliberalism, they were predominantly embedded within the logic of quality of care, economic, and consumerist perspectives. Relatively powerful actors such as care-providers and health facility administrators used a panoply of discursive strategies such as emphasizing alternate discourses and controlling discursive resources to suppress the promotion of patient rights among care-seeking individuals in health facilities. As a result, the capacity of care-seeking individuals to know and claim patient rights was restricted. With neoliberal health policies promoting austerity measures on public health care system and weak implementation of health care regulations, patient rights discourses remained subdued in health facilities in Karnataka, India. Conclusions The empirical findings on the local expression of patient rights in the discourses allowed for theoretical insights on the translation of conceptual understandings of patient rights to practice in the everyday lives of health system actors and care-seeking individuals. The CDA approach was helpful to identify the problematic aspects of discourses and discursive practices on patient rights where health facility administrators and care-providers wielded power to oppress care-seeking individuals. From the practical point of view, the study demonstrated the limitations of care-seeking individuals in the discursive realms to assert their agency as practitioners of (patient) rights in health facilities.

This paper questions the view that performance-based financing (PBF) in the health sector is an effective, efficient and equitable approach to improving the performance of health systems in low-income and middle-income countries (LMICs). PBF was conceived as an open approach adapted to specific country needs, having the potential to foster system-wide reforms. However, as with many strategies and tools, there is a gap between what was planned and what is actually implemented. This paper argues that PBF as it is currently implemented in many contexts does not satisfy the promises. First, since the start of PBF implementation in LMICs, concerns have been raised on the basis of empirical evidence from different settings and disciplines that indicated the risks, cost and perverse effects. However, PBF implementation was rushed despite insufficient evidence of its effectiveness. Second, there is a lack of domestic ownership of PBF. Considering the amounts of time and money it now absorbs, and the lack of evidence of effectiveness and efficiency, PBF can be characterised as a donor fad. Third, by presenting itself as a comprehensive approach that makes it possible to address all aspects of the health system in any context, PBF monopolises attention and focuses policy dialogue on the short-term results of PBF programmes while diverting attention and resources from broader processes of change and necessary reforms. Too little care is given to system-wide and long-term effects, so that PBF can actually damage health services and systems. This paper ends by proposing entry points for alternative approaches.

Despite the growing consensus on the benefits of initiating palliative care early in the disease trajectory it remains unclear at what point palliative care needs to emerge. This study investigates quality of life and unmet palliative care needs at three phases in the cancer trajectory: curative, life prolonging and most advanced (prognosis < six months/no further disease-modifying treatment). Self-reported data from 620 patients with cancer in the University Hospital of Ghent, Belgium were collected. The patients completed a questionnaire on quality of life (using the EORTC QLQ-C30) and unmet care needs within the domains of palliative care. European reference values of the EORTC QLQ-C30 were used to compare the mean scores with a norm group. The groups further on in the cancer trajectory reported statistically and clinically poorer functioning compared with earlier phases, also when controlled for the effects of sex, age or type of cancer. Higher symptom burdens for fatigue, pain, dyspnoea and appetite losswere found in groups further into the trajectory, p

De behandeling van prostaatkanker kent vele mogelijkheden, die in verschillende fases van de ziekte ingezet kunnen worden. De huisarts kan de patient in elk stadium van de ziekte ondersteunen. In de diagnostische fase kan de huisarts voorlichting geven om de patient te ondersteunen bij het nemen van een beslissing om diagnostiek te laten verrichten. Daarna kan de huisarts met de patient in gesprek blijven over zijn voorkeuren en behandelingsopties, zowel in het curatieve traject als in de terminale fase. Aan de hand van casuistiek zullen in dit hoofdstuk diagnostiek en behandeling van prostaatkanker besproken worden en welke rol de huisarts daarbij op zich kan nemen.

Elk jaar wordt in België en Nederland bij ongeveer 65.000 en 102.500 personen kanker vastgesteld. De huisarts wordt op verschillende tijdstippen van het ziekteproces geconfronteerd met kankerpatiënten. Het incidentiecijfer is voor de huisarts belangrijk, omdat dit aangeeft hoe groot de kans is dat een patiënt met een bepaald type kanker zich aanbiedt in de praktijk. Ongeveer 42 % van deze patiënten overlijdt ten gevolge van kanker. Deze cijfers hebben een onmiddellijke impact op de praktijk van de huisarts. Hij of zij is immers vaak de spilfiguur in de behandeling en begeleiding van de patiënt vanaf diagnose tot aan het levenseinde (palliatieve zorg, symptomatische en comforttherapie). Wat betreft de organisatie van de zorg moeten we rekening houden met een stijgende trend van de kankerincidentie, die zich de volgende jaren zal voortzetten. In dit hoofdstuk introduceren we de begrippen kankerincidentie, sterfte en prevalentie en vermelden we telkens enkele kerncijfers ter illustratie. De verwachtingen voor de kankerincidentie in de toekomst (2025) worden kort besproken. Daarnaast wordt het belang van de kankerregistraties als bron van dit hoofdstuk toegelicht.

In this paper, we respond to a paper by Jamal and colleagues published in Trials in October 2015, taking the opportunity to continue the much-needed debate about what applied scientific realism is. The paper by Jamal et al. is useful because it exposes the challenges of combining a realist evaluation approach (as developed by Pawson and Tilley) with the RCT design. We identified three fundamental differences that are related to paradigmatic differences in the treatment of causation between post-positivist and realist logic: (1) the construct of mechanism; (2) the relation between mediators and moderators on one hand, and mechanisms and contexts on the other hand, and (3) the variable-oriented approach to analysis of causation versus the configurational approach. We show how Jamal et al. consider mechanisms as observable, external treatments and how their approach reduces complex causal processes to variables. We argue that their proposed RCT design cannot provide a truly realist understanding. Not only does the proposed realist RCT design not deal with the RCT’s inherent inability to ’unpack’ complex interventions, it also does not enable the identification of the dynamic interplay between intervention, actors, context, mechanisms and outcomes, which is at the core of realist research. As a result, the proposed realist RCT design is not, as we understand it, genuinely realist in nature.

Background Discussing incurable cancer, treatment options and prognosis is for most oncologists a very difficult issue in clinical practice and is often avoided, leading to delays in transition to adequate palliative care. As first phase in the development of a clinical guidance tool for such discussions, an interview study was designed with oncologists, advanced cancer patients and family members to identify key factors in conducting discussions of incurability and palliative care. Method Several methodological requirements guided the drafting of the protocol. A qualitative approach was the most appropriate to gain insight in preferences, opinions and experiences. Special attention was paid to the recruitment of oncologists, and of patients and family members given their vulnerability and the sensitivity of the topic. Another challenge was to motivate and persuade oncologists to participate. Results Semi-structured in-depth interviews were used to gather data. A purposive sample of 10 to 15 participants was selected for each interview group: oncologists, patients and family members. Recruitment of all participants was done from 33 Belgian Medical Oncology Departments. Oncologists received monetary compensation for interviews which were scheduled according to their timetable and lasted at most 1 hour. They were also asked to identify and approach advanced cancer patients under their care with whom they had communicated incurability and palliative care options. Patients who agreed to participate identified the most relevant family member. Interviews were conducted in an environment where patients felt comfortable, mostly in their own home, and overly burdening and confronting questions were avoided. Discussion Ample measures were taken to counter oncologists' lack of time to participate in studies, and to minimise emotional burden for patients. This study will provide a strong basis for creating a clinical guidance tool and communication training for physicians.