The Role of the Patient: Expectations, Responsibilities, and Rights

1. THE ROLE OF THE PATIENT Alberto Lifshitz

2. AGENDA • What is a patient? • Rights and privileges • Responsabilities • Expectations, desires, fears, apprehensions

3. AGENDA • The patient… …in medical care …in medical education …in research …in health policy

4. THE ROLE OF THE PATIENT IN… • Asking for medical care • Choosing among different services • Therapeutic decisions • Therapeutic adherence • The assesement and improvement of health services • Self-medication, self prescription and self care • Patient’s voice: narrative

5. Who has patience Padeciente The one having contact with a health system The one who receive health services Consumer of health services Sufferer Health services user Client

9. Regulation Prescription Intervention Advice Obedience Give help

10. SOME TRENDS • The patient increases his participation and refuse just to obey • Doctors mantain in a top position • Expert deserves in promotor • Family doesn’t collaborate • Authorities exclude themselves • Society protest and mobilize

11. MEDICALINFORMATION HAS CHANGED

12. “Sorry Doctor, but again I don’t agree with you“ Cyberchondria

13. What does the patient expects? • Just a treatment? • To be understood • Compassion • Empathy • To be heard • Tounderstandwhatis happening • Toparticipatewithhis/her medical care

14. What does the patient expects…? • To understand familial and social issues related to his/her illness • A global interpretation of his/her health status • Taking account his/her individuality • Taking account his/her intelectual, economic, and cultural differences

15. Health is a colective responsability which begin on the individual

16. SOME PRIVILEGES OF PATIENTS • To identify the necessity for asking medical care • Urgent • By phone • Scheduled • To choose the kind of care wanted • Alternative • Scientific • Specialized • To choose between different doctors • To agree or disagree with some procedures • To follow or not prescriben treatment • To watch for adverse events • To watch for disease evolution

17. Tell me more about that acupuncture diet. It really works?

19. ADHERENCE... Is it just a discipline to be obedient without any criticism? • Full comprehension of therapeutics precribed • Conviction • Asigning a value • Involuvement • Commitment

20. FACTORS RELATED WITH ADHERENCE • Correct and sufficient information • The patient gives a high priority to his/her health • Adherence is better when Most simplified measures are used: less dose, hourley dose is related with daily activities, less medication and less instructions

21. FACTORS RELATED WITH ADHERENCE • Frequency of side effects and possibility to prevent them • Costs of treatment • Patient’s expectations • Trust in doctors and health system • Self destructive attitud (depressión) • Competetivity with alternative medicines c

22. TWO VITAL PHILOSOPHIES • Do I take care for me now to have a better future? • Do I enjoy life now considering that the future es uncertain?

23. “EL GOCE DE MORIR SIN PENA BIEN VALE LA PENA DE VIVIR SIN GOCE”

26. REGULATION • Self-regulation • Conventional • Pair regulación • Regulation by the law and other rules • Other ways of social regulation

27. SOCIAL REGULATION OF MEDICAL PRACTICE

28. SOCIAL REGULATION OF MEDICAL PRACTICE • Patients are now different than before • Autonomy • Organized groups • More complaints and demands • Pair surveillance

29. SOCIAL REGULATION OF PRACTICE • PATIENT EMANCIPATION MOVEMENT

32. “His reflexes are normal, but he has been waiting for two hours”.

33. Elementary experiences( Laín Entralgo) • Disability • Discomfort • Threat • “Suction from the body” • Loneliness • Abnormality • Resource GUILTY

34. COMORBIDITY

35. AUTONOMY IN MEXICAN SOCIETY • A long paternalitic tradition with resignation in front of a disease(“cosmic fatalism”) • Some patients don’t want to use it • Many decisions are collegialy taken (by family, by friends)

36. AN IMPERFECT MARKET(without a sanitaryjudgment) • In doctor’s election • The most permissive • The better looking • The most handsome • The best self-promoted • In remedies election • The best promoted • The most miracle like • The one which fill specific expectations

37. “HOW TO SELECT A DOCTOR” • Board certified • Not so young nor so old • Looks presentable and clean • With both experience in public hospitals and private practice • With academic curriculum: professor, researcher, miember of academies

38. “HOW TO SELECT A DOCTOR” • Accessible: by phone, e-mail, proximity of the office • Some evidence that he/she is not a bussines person • Visión of patient as a whole and not as a part or an addition of parts • Flexible and comprehensive but firm in the recomendations

39. “HOW TO SELECT A DOCTOR” • Looks interested on you and not only in your disease • Recommended by his/her patients • Doesn’t have an excess of marketing or diplomas • Knows to listen more tan talking • Explores completely

40. “HOW TO SELECT A DOCTOR” • Makes writed clinical histories • Knows how can be understendable • Take his/her time for recomendations • Explains what do you have and not only express orders • Is not afraid from questions made • Doesn’t underestimate patiens supposing they can not understand

41. “HOW TO SELECT A DOCTOR” • Doesn’t request for an excess of studies and in any case explains why • Doesn’t prescribe more medication than the essential and explains why • Explains hygienic and dietetic measures

42. “HOW TO SELECT A DOCTOR” • Doesn’t tray to create dependency on him/her • His/her colleagues have a good opinión on him/her • Doesn´t lie • Have sensibility for delicated items

43. PATIENT IN MEDICAL EDUCATION • In clinical learning • In evaluation of clinical learning

44. “To study the phenomena of disease without books is to sail an uncharted sea, while to study books without patients is not to go to sea at all” William Osler, 1901 “Estudiar los fenómenos de la enfermedad sin libros es navegar sin mapas en el océano, pero estudiar los libros sin pacientes es ni siquiera salir al mar”

47. LA LEY DEL ARRAIGO MÉDICOGermán Dehesa “Artículo primero. Ningún médico que esté en ejercicio de su profesión tendrá derecho a alejarse de sus pacientes una distancia superior a los cinco kilómetros. Este artículo es aplicable en todo tiempo y lugar y su obligatoriedad sólo cesará ante la comprobada defunción del paciente y/o del facultativo.”

48. LA LEY DEL ARRAIGO MÉDICOGermán Dehesa “Artículo segundo. En el improbable caso de que el médico desease tomar vacaciones, éstas tendrán como duración máxima dos semanas y, para ejercer este derecho, el galeno deberá recabar con antelación el permiso escrito del paciente quien, a su vez, puede ejercer el derecho de acompañar al médico y ocupar el cuarto contiguo en el hotel del centro vacacional. Los gastos que esto ocasione correrán totalmente a cargo del médico vacacionante.”

49. LA LEY DEL ARRAIGO MÉDICOGermán Dehesa “Artículo tercero. Queda expresa y totalmente prohibida la inmoral costumbre de abandonar la localidad con la frágil coartada de que el médico va a asistir a alguna de esas solapadas orgías que se disfrazan con el eufemismo de “congresos”. En este caso, la única excepción sería la ya contemplada en el artículo anterior. Si un médico quiere dar rienda suelta a sus instintos so pretexto de “ponerse al día”deberá convidar a los pacientes que así lo soliciten.”

50. LA LEY DEL ARRAIGO MÉDICOGermán Dehesa “Artículo cuarto. Todo médico que sea sorprendido en la atentatoria práctica de dejarle su “beeper”al encargado de una farmacia, a un pasante de odontología, o a alguna cuñada que es archivista pero muy buena para recetar, será conducido directamente a Almoloya, donde permanecerá confinado e incomunicado durante cinco años. Cumplida esta primera fase del castigo, el satánico galeno tendrá derecho a comunicarse al “beeper” de su abogado para que vea lo que se siente.”