Ciencia, Alivio y Esperanza

1. Ciencia, Alivio y Esperanza ww.pallium.org.ar

2. Transcultural aspects in care of the Dying Argentinian and Latin American context Dr. Vilma Tripodoro PalliumLatinoamerica

3. Spring in Buenos Aires

4. Transcultural aspects in care of the Dying Argentinian and Latin American context Dr. Vilma Tripodoro PalliumLatinoamerica

5. Argentinians: are verylowprofilepeople

7. 1 • This was a joke but what follows is not:

8. Today, we are talkingfromthem

9. 1 • 80% of Latin American countries do not acknowledge PC as a discipline and thus do not include it in public health services.

10. 1 • only 5 to 10% of patients in terminal stages of the region receive this treatment, • 90 % of theteams are concentrated in bigcities • 50 % of thepatients cannotafford PC • Pastrana T, De Lima L, Wenk R, et al. Atlas de Cuidados Paliativos de Latinoamérica. Houston, TX: IAHPC Press, 2012, http://cuidadospaliativos.org/atlas-de-cpde-latinoamerica/

11. Who in thefield of PC in Europeor in LA has notbeenconfrontedwith: • Limitations • Frustration • Incertitude • Lack of recognition • Exhaustion • Others

12. Howmany of ushadtoresolveproblemsbyusingtheir: • Creativity • Honesty • Courage • Perseverance • Hardwork

13. 3 "OUR NORTH IS THE SOUTH" Joaquin Torres García, 1943

14. 1Latin American context. • 2Whatdoes “Good” and “Bad” death mean forus? • 3EoLdecisionmaking: similarities and differences. • 4The PAMPA program: Thebestcare of theDyingPatient in Argentina. • 5Futurechallenges.

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17. 1 4 Nurses every 10.000 people 32 doctorsevery 10.000 people Nurses(2/3 non-professional) Dentists Psycho + SW Doctors(2/3 specialists) PAHO 2013

18. 1 2014 Level3b : generalizedprovision

19. 1 • Level3b : generalizedpalliativecareprovisionmeans: • the development of PC activism • multiple sources of funding • the availability of morphine • a number of PC services independent of the healthcare system • the provision of some training and education initiatives by the hospice organisations. • (like Pallium Institute (NGO) and the PAMPA Program) 2014

20. 1 1,2 to 4,8 teams x millionpeople 2014

21. 1 Although Argentina had made ‘major advances in PC over the last 20 years’, there was still only: • localised PC provision; • ‘great disparity’ still existed in the palliative care that was provided, • according to geography and areas still existed where PC was inaccessible; • Argentina re-categorised from group 4 to group 3b. 2014

22. 1 No specificlaws No nationalprogram No audit, evaluationormonitoring No fundingfordevelopment

23. 1 Palliative care development in Latin America: An analysis using macro indicators.Pastrana T, Torres-Vigil I , De Lima L. Palliat med June 2014

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25. 2 Whatdoes “Good” death and “Bad” death mean in Argentina?

26. 2 • Journal of Hospice & Palliative NursingVolume 16 Number 3 May 2014

27. 2 10 categoriesexplored • Experiences of “Good and Bad Death” • Common Aspects in End-of-Life Trajectories • UnexpectedorSurprisingIssues • Spirituality • The Role of Relatives • Deciding to Become a Palliative Care Specialist • Role of Religion • MovingSituations • Impacton Personal Life • The Best and the Worst

28. The results 1/3: 2 • a) ‘‘Good’’ deaths were considered those in which physical symptoms were dealt with, where the patient was surrounded or on good terms with family members, and where they were at peace with themselves, any unfinished business, or God. • ‘‘Bad’’ deaths were believed to be those where the patient was physically uncomfortable, were within a conspiracy-silence atmosphere, and died alone.

29. 2 The results 2/3: • b) The factors in common, that staff members identified regarding deaths, were the need for spiritual comfort, peace, and acceptance and the need for attaining a deep connection with others.

30. The results 3/3: 2 • c) The unexpected issues identified among end-of-life trajectories were the varying attitudes that patients had regarding death. • d) The personal life of the staff was affected by being in charge of end-of-life care decision making.

31. 2 Might it have a different meaning in other cultures?

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33. 3 WP 2 End-of-lifedecisionmaking • withdrawing and/or withholding of medical treatment • symptom management • place of death • information & communication • social/relational issues Opcare 9: A European Collaboration to optimise research for the care of cancer patients in the last days of life 2008-2011

34. 66% ARGENTINA n 11 OPCARE 9 n = 106

35. 3 WP 5 VoluntaryService

36. 3 WP 5 Conclusion

37. 3 2014 Project Title: “A LIVING COMMUNITY PRESENCE”: Development and evaluation of a training program on home care volunteers at the end of life Based on PROCARE protocol Main Researchers: De Simone G, Jorge M, D’ Urbano E, Solmesky A Work in progress

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39. Pallium’ s End of lifeStrategy Identification and assistancecancer and non-cancerpatients NECPAL Program(GSF- PIG) PAMPA Program Coordination Dr Gustavo De Simone and VilmaTripodoro

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42. 4 PAMPA

43. 4 3 PAMPA Program Welcome!! ProgramaAsistencialMultidisciplinarioPAllium

44. 4 PAMPA Program 2008 2009 2010 2011 2012 2013 Buenos Aires 2014

45. 4 • LanariInstitute • University of Buenos Aires Home care • Udaondo Hospital (City of BA) Hospital wards and home care

46. More challenges in thefuture! 5

47. 5 2014

49. 5 2014

50. OurTeams Thankyou!