Rethinking Primary–Palliative Care Collaboration: Insights from a Mixed-Methods Study in a Spanish Region

Technical Summary: Rethinking Primary–Palliative Care Collaboration

Problem Statement
Achieving high levels of access to palliative care requires a dual approach involving both specialist palliative care services and primary (generalist) care provision. While successful system-level integration has been demonstrated in specific Spanish regions like Catalonia and Extremadura, access remains variable across Spain. In the Basque Country, specifically the Álava province, a strategic plan mandates that primary care providers deliver primary palliative care, supported by specialist teams. However, the specific experiences, needs, and preferences of primary care professionals regarding this model, and the feasibility of optimizing collaboration between primary care and the community-based specialist team (Equipo de Soporte de Atención Paliativa, or ESAP), had not been fully assessed. The study addresses the need to understand the current state of this collaboration to inform a regional quality improvement initiative.

Methodology
The study employed a mixed-methods approach using an explanatory sequential design, combining quantitative and qualitative data collection and analysis.

• Context: The study was conducted in Álava, a province within the Basque Autonomous Community, served by the integrated healthcare organization (OSI Álava). This region features a unique structure where a single specialist palliative care service (ESAP) includes a community support team (physician and nurse) distinct from most other regions in the Basque Country.
• Quantitative Component: An anonymous online survey was distributed to 602 primary care professionals (physicians and nurses) in February 2025. The questionnaire included multiple-choice, nominal, Likert scale, and open-ended items to assess needs, perceptions of the current model, and ideas for improvement.
• Qualitative Component: Following the survey, three semi-structured focus groups were conducted: two with primary care providers and one with the ESAP team. Purposive sampling ensured representation across professions, experience levels, and geographical areas (urban/rural).
• Analysis: Quantitative data were analyzed using descriptive statistics (frequencies, percentages, means, standard deviations) and inferential tests (Chi-Square, Fisher's exact) via SPSS. Qualitative data (focus group transcripts and open-ended survey responses) were analyzed using inductive thematic analysis and enumerative content analysis via ATLAS.ti.

Key Results

• Survey Demographics and Engagement: Of 602 invited professionals, 118 responded (19.6% response rate). The majority were nurses (54%) and physicians (42%), with 85.7% working in urban settings. 89% reported providing palliative care in the last six months.
• Referral Patterns: When support was needed, primary care professionals consulted the ESAP team most frequently (61%), followed by the Hospital-at-Home (HaD) service (16.9%).
• Role Perception:
  • 67.6% of respondents viewed themselves as providers of primary palliative care, supported by ESAP or HaD teams.
  • 32.4% saw no role for themselves in providing palliative care, preferring that ESAP or HaD teams assume full responsibility.
  • Regarding the ESAP's future role, 56% favored a continued support/consultation model, while 26% believed ESAP should take over as the primary responsible clinicians for all palliative care.
• Qualitative Themes (Facilitators): Primary care providers identified four main facilitators:
  1. Access to ESAP: Valued for responsiveness, clinical advice, and multidisciplinary support (including social workers and psychologists).
  2. Collaboration: A model where primary care remains the "most responsible practitioner" (MRP) with ESAP support was preferred over models where ESAP or HaD takes over care entirely.
  3. Education: "Just-in-time" learning and workshops increased provider confidence and autonomy.
  4. Patient Supports: Availability of home nursing resources facilitated home-based care.
• Qualitative Themes (Barriers): Key obstacles included workforce shortages, high patient loads, lack of training (especially among temporary staff), and issues with care continuity.
• ESAP Team Perspective: The specialist team highlighted the "relativity of complexity" (what is complex depends on the primary provider's skill level) and the nuanced nature of their support role. They emphasized that resource constraints make it infeasible for them to act as sole providers for the population. They noted that unrealistic expectations from families regarding visit duration and frequency often arise due to the difference in time availability between specialist and primary care teams.

Key Contributions
The paper contributes to the literature by:

1. Empirical Data on Collaboration: Providing specific data on the attitudes and practices of primary care providers in a Spanish region attempting to operationalize a primary palliative care model.
2. Identification of Divergence: Highlighting a significant split in opinion where a minority (approx. one-third) of primary care providers prefer a "Takeover" model (where specialists assume full responsibility) due to workload and training gaps, contrasting with the majority who support a collaborative "Consultation" or "Shared Care" model.
3. Operationalizing Concepts: Applying the Consultation–Shared Care–Takeover (C-S-T) Framework to analyze the current state, revealing that while "shared care" is discussed, the operational reality often leans toward consultation, with friction arising from mismatched expectations regarding role boundaries.
4. Systemic Insights: Identifying that while the ESAP team is a critical facilitator, their small size and resource constraints prevent them from acting as a safety net for all palliative needs, necessitating capacity building within primary care.

Significance and Claims
The authors claim that this study offers "important insights to inform ongoing strategies to improve collaboration between primary care providers and specialist palliative care teams." The significance lies in its ability to guide a regional quality improvement initiative in Álava.

The paper modestly concludes that while most primary care professionals value their role in providing primary palliative care and the support of the ESAP team, a notable minority prefer handing over care entirely. The authors assert that a "Takeover" model by specialist teams is neither feasible nor sustainable long-term. Instead, the study suggests that future strategies must focus on:

• Building primary palliative care capacity through education and upskilling.
• Clarifying roles and expectations to prevent "deskilling" or inappropriate care withdrawal.
• Developing multipronged solutions that include increased roles for nurses in primary care and embedded resource persons.

The authors acknowledge limitations, including the modest survey response rate and the lack of a common lexicon for terms like "collaboration" and "shared care" among participants. They state that the findings have local relevance for the Basque Country and wider relevance for similar initiatives in Spain and internationally, but they do not propose specific new experimental interventions, rather serving as a diagnostic basis for existing strategic plans.