Beyond the generalist: Clarifying specialist expertise in palliative care

This dissertation describes what specialist palliative care expertise entails and how it relates to generalist palliative care, which all healthcare professionals (HCPs) are expected to provide to patients and families facing incurable illness or increased vulnerability. Chapter 1 outlines the international and Dutch context of palliative care and illustrates structural shortcomings, including insufficient basic knowledge among HCPs and a lack of awareness of available specialist expertise and of how to engage it effectively. Collaboration between generalists and specialists, both in routine care and in consultation, is not yet consistently established. Although the Dutch National Quality Framework for Palliative Care (NQFPC) describes three professional roles (generalist, specialist, expert), these definitions remain difficult for many HCPs to interpret in practice. As a result, generalists may be uncertain about when to involve a colleague with specialist expertise, potentially leading to inappropriate or late palliative care, including unnecessary interventions or reactive rather than proactive care. The chapter also discusses the fragmented educational landscape. Considerable variation in training programs contributes to uncertainty about what constitutes specialized or expert status in palliative care. The central research question is therefore: What constitutes specialized expertise in palliative care, and how does it relate to generalist palliative care? Chapter 2: A cross-sectional study explored how HCPs classify themselves within the three NQFPC-defined roles. Self-identification was strongly associated with work experience and additional palliative care training. Interestingly, professionals with similar educational backgrounds sometimes identified themselves differently, ranging from generalist to expert. Respondents expressed a need for clearer role definitions, development pathways, and criteria for when to consult a specialist. Chapter 3 A scoping review, conducted according to PRISMA-ScR guidelines, analyzed international descriptions of specialist and expert roles. Five core roles for specialists were identified: caregiver, consultant, educator, researcher, and advocate. Leadership emerged as an overarching competency across all roles. International literature does not formally distinguish an “expert” role. Competencies were found to be relevant not only at the individual level but also at the team level, for instance within consultation teams or community-based PaTz groups. Chapter 4 A modified Delphi study aimed to achieve consensus on role descriptions, prerequisites (work experience and education), and essential competencies. Essential competencies included primary care-process competencies and cross-cutting competencies. Specialists were distinguished from generalists by their leadership in highly complex situations and their guiding, not substituting, role in supporting generalist colleagues. These findings culminated in a foundational profile for specialized palliative care professionals. Chapter 5 A sequential mixed-methods study investigated the tasks and positioning of palliative care nurses. Many lacked formal job descriptions, particularly in nursing homes and hospitals. Nurses demonstrated leadership by supporting generalists, building inter-organizational connections, and advocating for timely palliative care. Focus groups highlighted key factors influencing their role: clarity of role distinctions, collaboration, job descriptions, leadership, visibility, and financing. Despite their added value, cost-effectiveness data remain limited. Chapter 6 The O2PZ programme advanced the structural integration of palliative care in health education by developing an educational framework, revising curricula across qualification levels, creating an online platform, and establishing regional and national education hubs. Sustainable curricular embedding requires ongoing collaboration among educational institutions, care organizations, and the professional field. Chapter 7: The dissertation concludes that specialized palliative care should be understood as a professional role defined by specific conditions and competencies, rather than a formal job title. Persistent challenges include unclear role divisions, limited formal recognition of specialist expertise, and insufficiently developed collaboration structures. Recommendations target: • Education: structural, mandatory integration of palliative care in curricula. • Practice: implementation and organizational anchoring of the specialist profile. • Research: further exploration of underrepresented professional groups and collaboration models.