- PII
- S023620070020518-6-
- DOI
- 10.31857/S023620070020518-6
- Publication type
- Article
- Status
- Published
- Authors
- Volume/ Edition
- Volume 33 / Issue 3
- Pages
- 138-158
- Abstract
Moral distress is an actual problem of medical ethics, psychology and healthcare. Its direct effects are the persistence of negative affect, emotional burnout, doctors leaving the profession; indirect damage from moral distress includes a significant worsening of medical care, a decrease in the quality of life of patients and physicians. Pediatric palliative care is a particularly sensitive area to moral distress, rich in severe, intractable existential and moral problems. The article examines the basic concepts of the nature of moral distress in medical care in general and palliative care for children in particular, and analyzes the structure of the experience of moral distress by healthcare professionals. Based on the data of modern psychometric and phenomenological studies, the causes of experiencing moral distress are identified and generalized. The phenomenon of moral distress among patients of palliative care for children and their family members, which has so far rarely been in the focus of researchers, is considered separately. The study of moral distress is based on the sometimes antagonistic interaction of two research paradigms — phenomenological, focused on the analysis of people's experiences and psychometric, objectified; their correlation and the possibility of integrating the results obtained into healthcare practice are also discussed in this article.
- Keywords
- moral distress, palliative care for children, bioethics, medical ethics, pandemic, coronavirus infection, burnout
- Date of publication
- 24.06.2022
- Number of purchasers
- 13
- Views
- 829
References
- 1. Adelgeim I.E. "Ya khochy govorit’". Autopsikhoterapevticheskiye funktsii povestvovaniya Yu. Bargel’skoy i A. Starobonets o perinatal’noy potere. [“I want to speak”. The autopsychotherapeutic functions of J. Bargielska and A. Starobinets narration about a perinatal loss]. Slavic Almanac. 2019. N 3–4. P. 427–443. DOI: 10.31168/2073-5731.2019.3-4.5.02
- 2. Buy M.Z., Lebedeva A.Yu., Gordeev I.G., Volov N.A., Taratukhin E.O. Svyaz’ variabel’nosti serdechnogo ritma i pokazatelei sistemy gemostaza u bolhykh s ishemicheskoi boleznyu serdtsa, oslozhnennoi khronicheskoi serdechnoi nedostatochnost’yu [Heart rate variability and hemostatic parameters in patients with coronary heart disease and chronic heart failure]. Russian Journal of Cardiology. 2013. Vol. 18. N 5. P. 6–11. DOI: 10.15829/1560-4071-2013-5-6-11
- 3. Gallego R.D.G. Beloye na chernom. [White on Black] St. Petersburg, Limbus Press Publ., 2018.
- 4. Dudenkova I.V. Chto znachit byt’ nesovershennoletnim? [What Does it Meant to Be a Minor?]. Sociology of power. DOI: 10.22394/2074-0492-2019-1-30-50
- 5. Kirkevold M. Sestrinskoye delo. Analiz i otsenka teorii [Nursing: analysis and evaluation of theories]. Moscow, PER SE Publ., 2000.
- 6. Maldine A. O sverkhstrastnosti [On Transpassibility]. (Post)fenomenologiya: novaya fenomenologiya vo Frantsii i za ee predelami [(Post)Phenomenology: New phenomenology in France and beyond], ed. by Sholokhova S.A., Yampolskaya A.V. Moscow. Academic Project Publ., Gaudeamus Publ., 2014. P.151–203.
- 7. Smulevich A.B. Rasstroistva lichnosti [Personality disorder]. Psikhiatriya: Nauchno-prakticheskii spravochnik. [Psychiatry: A scientific and practical guide], ed. by Tiganov A.S. Moscow. Meditsinskoye Informatsionnoye Agentstvo Publ., 2016. P. 428
- 8. Starobinec A. Posmotri na nego. [Look at Him]. Moscow, AST, Corpus Publ., 2017
- 9. Federal'nye klinicheskie rekomendacii "Principy organizacii palliativnoj pomoshchi detyam i podrostkam s onkologicheskimi i gematologicheskimi zabolevaniyami". [Federal clinical guidelines “Principles of organization of palliative care for children and adolescents with oncological and hematological diseases”]. Moscow: Russian Journal of Pediatric Hematology and Oncology Publ.; Dmitry Rogachev National Research Center of Pediatric Hematology, Oncology and Immunology Publ., 2015.
- 10. Cheremnova T. Trava, probivshaya asphalt [Grass, asphalt samples]. Moscow: AST: Astrel Publ., 2011.
- 11. Cho H., Grady C., Tarzian A., Povar G., Mangal J., Danis M. Patient and family descriptions of ethical concerns. The American Journal of Bioethics. Vol. 20. N. 6. P. 52–64. DOI: 10.1080/15265161.2020.1754500
- 12. Clarke R. Sparks through the stubble: dying in a pandemic. Lancet. 2021; Vol. 398 N. 10294. P. 18–19. DOI: 10.1016/S0140-6736(21)01439-2
- 13. Clemente I. Uncertain Futures: Communication and Culture in Childhood Cancer Treatment. Chichester: John Wiley & Sons, 2015.
- 14. Corradi-Perini C., Beltrão J.R., Ribeiro U.R.V. de C.O. Circumstances Related to Moral Distress in Palliative Care: An Integrative Review. American Journal of Hospice and Palliative Medicine. 2021. Vol. 38. N 11. P. 1391–1397. DOI: 10.1177/1049909120978826
- 15. Depraz N. Microphenomenology of Chronicity in Psychosomatic Diseases: Diabetes, Anorexia, and Schizophrenia. Time and Body: Phenomenological and Psychopathological Approaches. Eds. by Tewes C, Stanghellini G. Cambridge University Press, 2020. P. 82–97.
- 16. Engel G.L. The need for a new medical model: a challenge for biomedicine. Science. 1977. Vol. 196. N 4286. P. 129–136. DOI: 10.1126/science.847460
- 17. Evans A.M., Jonas M., Lantos J. Pediatric Palliative Care in a Pandemic: Role Obligations, Moral Distress, and the Care You Can Give. Pediatrics. 2020, Vol. 146. N 1. e20201163. DOI: 10.1542/peds.2020-1163
- 18. Epstein E.G., Whitehead P.B., Prompahakul C., Thacker L.R., Hamric A.B. Enhancing Understanding of Moral Distress: The Measure of Moral Distress for Health Care Professionals. AJOB Empirical Bioethics. 2019. Vol. 10. N 2. P. 113–124. DOI: 10.1080/23294515.2019.1586008
- 19. Hamric A.B. A case study of moral distress. Journal of Hospice & Palliative Nursing. 2014. Vol. 16. N 8. P. 457–463. DOI: 10.1097/NJH.0000000000000104
- 20. Klein S.M. Moral distress in pediatric palliative care: a case study. Journal of Pain and Symptom Management. 2009. Vol. 38. N 1. P. 157–160. DOI: 10.1016/j.jpainsymman.2009.04.014
- 21. Knaul F.M., Farmer P.E., Krakauer E.L. et al. Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage: the Lancet Commission report. Lancet. 2018. Vol. 391. N 10128. P. 1391–1454. DOI: 10.1016/S0140-6736(17)32513-8
- 22. Malabou C. Morphing Intelligence: From IQ Measurement to Artificial Brains. New York: Columbia University Press, 2019.
- 23. Manara D.F., Villa G, Moranda D. In search of salience: phenomenological analysis of moral distress. Nursing Philosophy. 2014. Vol. 15. N 3. P. 171–182. DOI: 10.1111/nup.12048
- 24. Moral distress in the health professions. Ulrich C.M., Grady C. (eds.). Springer, 2018. ISBN 978-3-319-64625-1 doi: 10.1007/978-3-319-64626-8
- 25. Murakami Y. Phenomenological analysis of a Japanese professional caregiver specialized in Patients with amyotrophic lateral sclerosis. Neuroethics. 2020. Vol. 13. N 2. P. 181–191. DOI:10.1007/s12152-018-9379-2
- 26. Pourghaznein T., Heydari A., Manzari Z. S. Iranian mothers' experiences with children undergoing hemodialysis: a hermeneutic phenomenological study. Journal of Pediatric Nursing. 2018. Vol. 42. P. 19–25 DOI: 10.1016/j.pedn.2018.06.006
- 27. Rogers C.R. The necessary and sufficient conditions of therapeutic personality change. Journal of Consulting Psychology. 1957. Vol. 21. N 2. P. 95. DOI: 10.1037/h0045357
- 28. Rushton C.H., Kaszniak A.W., Halifax J.S. Addressing Moral Distress: Application of a Framework to Palliative Care Practice. Journal of Palliative Medicine. 2013. Vol. 16 N 9. P. 1080–1088. DOI: 10.1089/jpm.2013.0105
- 29. Selye H. Stress and distress. Comprehensive Therapy. 1975. Vol. 1. N 8. P. 9–13
- 30. Trotochaud K., Coleman J.R., Krawiecki N., McCracken C. Moral distress in pediatric healthcare providers. Journal of Pediatric Nursing. 2015. Vol. 30. N 6. P. 908–914. DOI: 10.1016/j.pedn.2015.03.001
- 31. Tutelman P. R., Drake E. K., Urquhart R. “It could have been me”: An interpretive phenomenological analysis of health care Providers' experiences caring for adolescents and young adults with terminal cancer. Journal of adolescent and young adult oncology. 2019. Vol. 8. N 5. P. 587–592
- 32. Ulrich C.M. The Moral Distress of Patients and Families. American Journal of Bioethics. 2020;20(6):68–70. DOI: 10.1080/15265161.2020.1754522
- 33. Whitehead P.B., Herbertson R.K., Hamric A.B., Epstein E.G., Fisher J.M.. Moral distress among healthcare professionals: report of an institution-wide survey. Journal of Nursing Scholarship. 2015. Vol. 47. N 2. P. 117–125. DOI: 10.1111/jnu.12115