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Barriers to early access to palliative care, including misconceptions and stigma

Introduction

Area of Discussion

  • Focus of the study:
  • i) To extrapolate the impediments that hinder early access to palliative care,
  • ii) with an emphasis on misconceptions and stigma.

Target Audience

Intended audience:

  • i) Healthcare professionals
  • ii) Caregivers, and
  • iii) Community members interested in augmenting end-of-life care.

Learning Outcome

By the end of this presentation:

  • i) The target audience will be well-versed regarding the challenges surrounding palliative care access and
  • ii) gain cognizance related to strategies to overcome these barriers.

Overview of palliative Care and its principles

  • Standard 1 (Person-Centered Care): Actively involves both patients and their families in care planning and decision-making to address stigma and misconceptions (Cross, 2019).
  • Standard 2 (Comprehensive Assessment and Care Planning): Ensures misconceptions are dispelled through clear communication(Fuoto & Turner, 2019). However, this is done while gaining an understanding of patient goals and needs (Rosa et al., 2020).
  • Standard 3 (Physical, Psychological, and Social Care): Emphasizes the importance of a holistic approach to reduce misconceptions by addressing the emotional well-being of patients and families (Akard et al., 2019).

Overview of the National Palliative Care Standards and identification of three standards that relate to the chosen topic

National Palliative Care Standards Overview:

  • Framework for high-quality palliative care across healthcare settings.
  • Promotes consistency and excellence in care provision. 

Standard 1: Person-Centered Care:

  • Tailor care to individual needs and preferences.
  • Active involvement of patients and families.

Standard 2: Comprehensive Assessment and Care Planning:

  • Thorough assessments and individualized care plans.
  • Clear communication to dispel misconceptions.

Standard 3: Physical, Psychological, Social, and Spiritual Care:

  • Holistic care addressing physical, psychological, social, and spiritual aspects.
  • Reduces misconceptions by emphasizing emotional and spiritual well-being.

Key Learning/Point from the 'Survivors Teaching Students' Program its Link to Evidence and Relevance to National Palliative Care Standard

  • Key Learning: Emphasizes the need for open communication and empathy in healthcare (Akdeniz et al., 2021).
  • Evidence Link: Study in the Journal of Palliative Medicine (2019) highlights patient misconceptions due to inadequate information and communication (Frey et al., 2019).
  • Relevance to Standard 1: Standard 1 stresses person-centered care, actively involving patients and families in care planning and decision-making (Holland & Jenkins, 2019).

Identification of the manner in which the key learning/point identified can be managed/assessed. 

Managing/Assessing Key Learning:

  • Communication Skills Training: Enhance patient-centered care and satisfaction (Journal of Clinical Oncology, 2013) (Levett-Jones et al., 2017).
  • Patient Feedback and Surveys: Identifies shortcomings and drives improvements (Martins Pereira et al., 2021).
  • Simulation-Based Education: Expands communication skills (Journal of Palliative Medicine, 2015) (Wolf et al., 2019).

Outline the role of the registered nurse regarding the key learning point identified.

Assessment and Holistic Care Planning:

  • Nurse's Role: Crucial in comprehensive assessment, addressing physical, psychological, and social needs (Journal of Hospice & Palliative Nursing, 2017) (Powell et al., 2020).
  • Effective Communication: The ramification of effective communication on the quality of palliative care is undeniable in nature (Macauley, 2018).
  • Patient and Family Education: Evidence from the Journal of Palliative Medicine in 2017, suggests that well-informed patients and families are more likely to access palliative care early. (Shen et al., 2019). Adequate resources to improve education eradicates the slightest notion of misconception regarding Palliative care (Freeman et al., 2020).

Conclusion

  • Key Principles: Adherence to palliative care principles and National Palliative Care Standards.
  • Emphasis on Empathetic Communication: Recognizing the importance of empathetic communication.
  • Collective Contribution: Working together to eliminate barriers to early access.
  • Improved Quality of Life: Enhancing the well-being of individuals with life-limiting illnesses.
  • Compassionate Healthcare System: Fostering a more compassionate and responsive healthcare system.

References

Akard, T. F., Hendricks-Ferguson, V. L., & Gilmer, M. J. (2019). Pediatric palliative care nursing. Ann Palliat Med, 8(Suppl 1), S39-48. :( https://www.researchgate.net/profile/Terrah-Akard/publication/325478222_Pediatric_Palliative_Care_Nursing_e-pub_ahead_of_print/links/5babf146299bf13e604f9898/Pediatric-Palliative-Care-Nursing-e-pub-ahead-of-print.pdf)


Akdeniz, M., Yardımcı, B., & Kavukcu, E. (2021). Ethical considerations at the end-of-life care. SAGE open medicine, 9, 20503121211000918. :( https://journals.sagepub.com/doi/full/10.1177/20503121211000918)
Cross, L. A. (2019). Compassion fatigue in palliative care nursing: A concept analysis. Journal of Hospice and Palliative Nursing, 21(1), 21. :( https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6343956/)


Freeman, L. A., Pfaff, K. A., Kopchek, L., & Liebman, J. (2020). Investigating palliative care nurse attitudes towards medical assistance in dying: An exploratory cross‐sectional study. Journal of Advanced Nursing, 76(2), 535-545. :( https://onlinelibrary.wiley.com/doi/abs/10.1111/jan.14252)


Frey, R., Balmer, D., Boyd, M., Robinson, J., & Gott, M. (2019). Palliative care nurse specialists’ reflections on a palliative care educational intervention in long-term care: an inductive content analysis. BMC palliative care, 18, 1-9. :( https://link.springer.com/article/10.1186/s12904-019-0488-4)


Fuoto, A., & Turner, K. M. (2019). Palliative care nursing communication: An evaluation of the COMFORT model. Journal of Hospice & Palliative Nursing, 21(2), 124-130. :( https://journals.lww.com/jhpn/abstract/2019/04000/palliative_care_nursing_communication__an.5.aspx)


Holland, K., & Jenkins, J. (Eds.). (2019). Applying the Roper-Logan-Tierney Model in Practice-E-Book. Elsevier Health Sciences. :( https://books.google.co.in/books?hl=en&lr=&id=erKMDwAAQBAJ&oi=fnd&pg=PP1&dq=Holland,+K.,+%26+Jenkins,+J.+(Eds.).+(2019).+Applying+the+Roper-Logan-Tierney+Model+in+ots=.%20%3A()&f=false)


Larkin, P. J. (2015). Compassion: the essence of palliative and end-of-life care. Oxford University Press. :( https://www.sciencedirect.com/science/article/abs/pii/S0885392421004310)
Levett-Jones, T., Hoffman, K., Bourgeois, S., Kenny, R., Dempsey, J., Hickey, N., ... & Jeffrey, K. (2017). Clinical reasoning. Pearson Education Australia. :( https://books.google.co.in/books?hl=en&lr=&id=hVc1EAAAQBAJ&oi=fnd&pg=PA25&dq=Macauley,+R.+C%20University%20Press.%20%3A()&f=false)


Macauley, R. C. (2018). Ethics in palliative care: a complete guide. Oxford University Press. :( https://books.google.co.in/books?hl=en&lr=&id%3A%20a%20complete%20guide.%20Oxford%20University%20Press.%20%3A()&f=false)


Martins Pereira, S., Hernández-Marrero, P., Pasman, H. R., Capelas, M. L., Larkin, P., & Francke, A. L. (2021). Nursing education on palliative care across Europe: Results and recommendations from the EAPC Taskforce on preparation for practice in palliative care nursing across the EU based on an online-survey and country reports. Palliative medicine, 35(1), 130-141. :( https://journals.sagepub.com/doi/full/10.1177/0269216320956817)


Powell, M. J., Froggatt, K., & Giga, S. (2020). Resilience in inpatient palliative care nursing: a qualitative systematic review. BMJ supportive & palliative care, 10(1), 79-90. :( https://spcare.bmj.com/content/10/1/79.abstract)


Rosa, W. E., Ferrell, B. R., & Wiencek, C. (2020). Increasing critical care nurse engagement of palliative care during the COVID-19 pandemic. Critical Care Nurse, 40(6), e28-e36. :( https://aacnjournals.org/ccnonline/article-abstract/40/6/e28/31109/Increasing-Critical-Care-Nurse-Engagement-of)


Shen, Y., Nilmanat, K., & Promnoi, C. (2019). Palliative care nursing competence of Chinese oncology nurses and its related factors. Journal of Hospice & Palliative Nursing, 21(5), 404-411. :( https://journals.lww.com/jhpn/abstract/2019/10000/palliative_care_nursing_competence_of_chinese.10.aspx)


Wolf, A. T., White, K. R., Epstein, E. G., & Enfield, K. B. (2019). Palliative care and moral distress: an institutional survey of critical care nurses. Critical care nurse, 39(5), 38-49. :( https://aacnjournals.org/ccnonline/article-abstract/39/5/38/22045/Palliative-Care-and-Moral-Distress-An)

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