Advancing Evidence-based Palliative Care Research: Navigating Challenges and Proposing Solutions

INTRODUCTION

In recent times, the demand for palliative care has surged, driven by an aging global population and improved diagnostic techniques and therapeutic interventions for terminal illnesses. The primary objectives of palliative care involve the provision of optimal supportive care and the alleviation of distressing symptoms. However, the lack of substantiated research in this field poses significant challenges to achieving evidence-based practices.^[1]

The landscape of healthcare has experienced a paradigm shift, with palliative care emerging as a critical domain. As life expectancy rises and medical advancements continue, there is an increasing need for palliative care services that offer comprehensive support and symptom relief to individuals dealing with terminal illnesses.^[2] Nevertheless, within this growing necessity, a substantial challenge exists: The scarcity of well-founded research in palliative medicine.

UNPACKING THE CHALLENGE: THE LACK OF VALIDATED LITERATURE

Despite its vital significance, palliative care research encounters a distinct set of obstacles that hinder the establishment of evidence-based practices. The intricate nature of patients’ conditions, characterised by unpredictable disease trajectories and complex symptom manifestations, presents inherent barriers to conventional research methodologies.^[3] Furthermore, ethical considerations surrounding the inclusion of vulnerable patients add another layer of complexity. The personalised treatment goals of terminally ill patients contribute to the formation of a diverse patient cohort, complicating the task of assembling a substantial and homogeneous sample size for meaningful research.^[4]

In addition, the scarcity of comprehensive clinical trials in this field limits the availability of foundational studies that typically serve as catalysts for further investigation. This scarcity obstructs the advancement of evidence-based protocols and hinders the generation of innovative hypotheses for future exploration.

ILLUMINATING THE PATH FORWARD: INNOVATIVE SOLUTIONS

Recognising these challenges, the palliative care community is actively seeking solutions to facilitate evidence-based research, which is essential for informing effective care provision. One promising avenue involves adapting research protocols to incorporate research leadership and capacity-building components.^[5] This approach enables researchers to leverage the expertise of experienced leaders to guide studies and cultivate research skills among newcomers.

Another encouraging approach is the utilisation of non-randomised controlled trials (non-RCTs) with equivalent rigor and scale. Various non-RCT designs, such as observational cohort studies, propensity score matching, pre-post studies, interrupted time series analysis, non-randomized comparative studies, retrospective studies, pragmatic trials, and qualitative research, offer feasible and valuable alternatives to traditional RCTs in palliative care research, allowing flexibility in methodology based on the research question and resource availability.^[6-10] These pragmatic alternatives to traditional RCTs can provide valuable insights into the efficacy of palliative care interventions.

In addition, embracing a mixed-methods research approach holds immense potential. By combining diverse research tools and methodologies, a comprehensive understanding of intricate patient experiences can be achieved, leading to more holistic and impactful care strategies.^[11]

Pilot feasibility studies emerge as a practical solution to refine research logistics and test hypotheses before embarking on larger endeavours. This preliminary phase assists researchers in fine-tuning their methodologies and anticipating potential challenges, ultimately enhancing the quality of subsequent studies.

Furthermore, the dissemination of research knowledge among palliative care practitioners through tailor-made training modules and research-oriented curricula is of paramount importance.^[12] Empowering these practitioners with research acumen allows them to actively contribute to the growth of evidence-based practices within their field.

Finally, establishing and maintaining a palliative care research network (PCRN) dedicated to fostering collaboration and disseminating research outcomes within different palliative care settings would be another significant step toward bridging the research gap.^[13] Establishing the PCRN in India would be a vital step to enhancing palliative care quality and bridging research gaps. PCRN’s core objectives involve nurturing palliative care scholars, developing research programs, promoting collaboration, securing funding, raising awareness, upholding ethical guidelines, employing rigorous research methodologies, and continuously evaluating its impact.^[14,15] To implement PCRN, it is essential to commit dedicated resources, foster collaboration, and align activities with core objectives. The ultimate goal is to improve palliative care quality, enhance patient outcomes, and contribute to the well-being of those facing severe illnesses. The specific methodology for implementing PCRN may be in India when compared to developed countries. However, it should remain aligned with the fundamental components and objectives, ensuring a standardised approach to palliative care research and fostering collaboration within different palliative care settings.

Figure 1 outlines the key points regarding advancing evidence-based palliative care while proposing solutions for the challenges.^[16]

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Figure 1:

Key challenges and solutions for evidence-based palliative care research.

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CONCLUSION

In summary, the barriers presented by the scarcity of well-founded research in palliative medicine are formidable. Nonetheless, by embracing innovative methodologies, investing in capacity building, and fostering a collaborative research environment, the palliative care community can conquer these challenges. As we confront these obstacles head-on, we are laying the foundation for an era of evidence-based practices that genuinely cater to the needs of individuals facing serious illnesses. Through collective efforts, we can ensure that palliative care remains a steadfast source of support and relief for patients and their families. In doing so, we honour the essence of palliative care – enhancing the quality of life for those in their most vulnerable moments.