SILVIYA ALEKSANDROVA-YANKULOVSKA Medical University of Pleven, Pleven, Bulgaria TRUTH TELLING TO TERMINALLY ILL PATIENTS IN BULGARIAN HOSPICES 1

OLD DEBATE ARGUMENTS FOR Respect for autonomy Settle family and other problems Effective palliative treatment Strengthens relationships Facilitated communication in the family Better team work Better physical condition (  anxiety,  distress,  DNR) ARGUMENTS AGAINST Depriving from hope Stress > suicide? Lack of time for adequate information process Lack of training Uncertain prognosis Difficult and causing stress in health professionals 2

ETHICAL DOCUMENTS The Charter on Medical Professionalism (US Accreditation Council for Graduate Medical Education) > openness and honesty in physicians' communication with patients World Medical Association Declaration on the rights of the patient > “Exceptionally, information may be withheld from the patient when there is good reason to believe that this information would create a serious hazard to his/her life or health”. LEGAL FRAMEWORK Bulgarian Health Act > no possibility to withhold information 3

TRADITIONS Asian and Muslim cultures > family rather than the patient Western cultures > priority of autonomy However Paternalism still exists! 4

OBJECT To study the issue of truth telling to terminally ill patients in Bulgarian hospices. METHODS Self-administered questionnaire Personnel and patients’ relatives 17 in-patient, 12 home care hospices and 5 palliative care units 5

RESULTSRESULTS Characteristics of participants NumberPercentage STAFF MEMBERS Type of hospice In-patient hospices Home care hospices Palliative care units Professional position Physician Nurse Other PATIENTS’ RELATIVES Type of hospice In-patient hospices Home care hospices Palliative care units Relationship Spouse Child Parent Other

PATIENTS’ AUTONOMY 7

PATIENTS’ AWARENESS OF THE DIAGNOSIS Do the patients know their diagnosis? In-patient hospice Home care settings Palliative care units n % n % n % No 7 5,9 12,6-- The majority Yes 60 50,8 2666,75278,8 Small part Yes 49 41,5 1128,11319,7 Not specified 21,712,611,5 Total (based on data from hospices’ managers and personnel) 8

PATIENTS’ AWARENESS OF THE DIAGNOSIS (based on data from relatives) 9

TIME AND SOURCE OF INFORMATION 10 When and who informed the patient about the diagnosis? In-patient hospicesHome care settingsPalliative care units Managers and personnel Relatives Managers and personnel Relatives Managers and personnel Relatives N % N % N % N % N % N % Don’t know 75,93835,212,61523,4--818,2 Physician before hospice admission 6050,44743,52666,74062,63553,12454,5 Physician after hospice admission 1613,476,525, ,8511,4 Relatives 2218,51614,8410,2710,923,0613,6 Combined 21,7--25,1--812,1-- Not specified 1210,1--410,323,146,012,3 TOTAL119100, ,039100,064100,066100,044100,0

INVOLVEMENT IN DECISION-MAKING 11 Do you involve patients and their relatives in decision-making? In-patient hospice Home care settings Palliative care units n%n%n% Yes4235,42051,32436,4 Yes, when it is possible6352,91641,03959,1 Only relatives1310,937,711,5 Not specified10,8--23,0 Total number of respondents119100,039100,066100,0 (based on data from hospices’ managers and staff)

CONCLUSION 12 Following the recent tendencies in bioethics in favor of respect for autonomy, Bulgarian physicians inform patients and try to develop partnership in most of the therapeutic relations. The issue of truth telling in case of terminally ill patients, however, is still one of the most complex and sensitive situations presenting moral dilemma in clinical practice. The last amendments in health law closed the door for the possibility not to tell the truth. Does this strict rule make things easier in practice?

THANK YOU 13 FOR YOUR ATTENTION! Contact information: Assoc. Prof. Dr. Silviya Aleksandrova-Yankulovska, MD, PhD, MAS Medical University of Pleven Dean, Faculty of Public Health 1, Kliment Ohridski str Pleven, Bulgaria