2. Setyo Purwono Department of Pharmacology & Therapy, Faculty of Medicine, Universitas Gadjah Mada

3. Ethical concerns over doctor-patient relationship Autonomy and patient choice Patient right Vs patient interest Integrity of the medical profession Shared decision-making in medical intervention

4. What constitutes a person’s autonomy? Three aspects of autonomy 1. Freedom of thought 2. Freedom of will 3. Freedom of action

5. Principles of medical ethics Respect for patient autonomy Beneficence Non-malficence Justice

6. Autonomy and patient rights Which of the following are derived from the value of patient autonomy? 1. Right to treatment 2. Right to information 3. Right to choices 4. Right to privacy 5. Right to compliant

7. Conflicting Values Paternalism: The doctor should act in a way that protects or advances the patient’s best interests, even if it is against the patient’s will. Patient autonomy: The doctor should help the patient to make real choice, and provide intervention under the constraints of (a) informed consent and (b) confidentiality.

8. Difficult cases for doctors: some examples Active and passive euthanasia Right to refuse treatment DNS (Do-not-resuscitate) order Abortion Experimental/risky interventions

9. Ethical models at a glance Paternalistic model Informative model Interpretive model Deliberative model

10. Evaluating the four models

11. Paternalistic model 1. Principle 2. Assumptions 3. Sources 4. Problems 5. Objection and modification The doctor should make all the decisions for a patient. People are not always rational/mature. Experts know better about the needs of patients. Qualified doctors have good will. Hippocratic Oath; Plato. Are the needs of patients objective? How can we be sure that doctors have good will? John Stuart Mill’s liberal principle

12. Paternalism Is widely regarded as the traditional form of doctor-patient relationship A passive patient and a dominant doctor

13. Informative model 1. Principle 2. Assumptions 3. Problems The doctor should provide all the relevant information for the patient to make a decision, and provide the selected intervention on this basis. A fact/value division of labor yields the best medical result. What is good for a patient depends on what his/her personal values. Consumerism. What if the patient is unconscious, incompetent, and making choices totally unacceptable by our ethical standards?

14. The interpretive model 1. Principle 2. Assumptions 3. Sources 4. Limitation The doctor should help the patient to articulate his/her values through interpretation, and provide intervention which is truly wanted. Patients have unconscious and inconsistent desires. Their conscious decisions may not reflect their deepest values. Sigmund Freud; hermeneutics. All that a doctor can do is to help the patient see his/her own desires/values more clearly, but not to criticize them.

15. The deliberative model 1. Principle 2. Assumptions 3. Source 4. Problems The doctor should help the patient to deliberate well through dialogue and discussion, and so develop values which are objective and truly worthy. The objectivity of values. The patient’s good life consists not in the satisfaction of desires, but maturity and rationality. Aristotelian ethics Is the model different from the paternalistic model? What is the difference between dialogue and persuasion?

16. Prototypes of doctor-patient relationship Physician control (Low) Physician control (High) Patient control (Low) DefaultPaternalism Patient control (High) ConsumerismMutuality

17. Consumerism The patients’ challenge to unilateral decision making by physicians in reaching closure on diagnoses and working out treatment plans Reversing the very basic nature of the power relationship

18. Patient’s role Health shoppers Indications of consumer behavior Cost-consciousness Information seeking Exercising independent judgment Consumer knowledge

19. Doctor’s role Health care providers Technical consultant To convince the necessity of medical services A tendency for the “consumer to be right”

20. Advantages Patients can have their own choices Medicine is not an accomplished science. There are tremendous gaps in knowledge. Indeed, it has been estimated that the effectiveness of treatment is unknown for about 90% of the medical condition seen in routine practice

21. Disadvantages Patients are being more selective in the acceptance of provider advice, based on its cost When things seem to go wrong, when satisfaction is low, or when a patient suspect less than optimal care or outcome, patients are more likely to question physician authority

22. Discussion The doctor-patient relationship of consumerism seems easily to be adopted, we can simplify the complicated relationship with “buyer and seller” relationship, is it good or bad? What is your opinion?

23. Mutuality The optimal doctor-patient relationship model This model views neither the patient nor the physician as standing aside Each of participants brings strengths and resources to the relationship Based on the communication between doctors and patients

24. Patient’s role Patients need to define their problems in an open and full manner The patient’s right to seek care elsewhere when demands are not satisfactorily met

25. Doctor’s role Physicians need to work with the patient to articulate the problem and refine the request The physician’s right to withdraw services formally from a patient if he or she feels it is impossible to satisfy the patient’s demand

26. Advantages Patients can fully understand what problem they are coping with through physicians’ help Physicians can entirely know patient’s value Decisions can easily be made from a mutual and collaborative relationship

27. Disadvantages Physicians do not know what certain degree should they reach in communication If the communication is fake, both physicians and patients do not have mutual understanding, making decision is overwhelming to a patient

28. Discussion Is the patient capable of making the important therapeutic decision even though they have good communication of the physician?

29. Default When patient and physician expectation are at odds, or when the need for change in the relationship cannot be negotiated, the relationship may come to a dysfunction standstill. Discussion How to resolve this kind of embarrassed situation?

30. Doctor-patient relationship in the past Paternalism Because physicians in the past are people who have higher social status “doctor” is seen as a sacred occupation which saves people’s lives The advices given by doctors are seen as paramount mandate

31. Doctor-patient relationship at present Consumerism and mutuality Patients nowadays have higher education and better economic status The concept of patient’s autonomy The ability to question doctors

32. Reasons for the change Doctors’ condition Patients’ condition Environmental factors Relationship between patients and doctors are often unstated, and they are dynamic As conditions change, the kind of relationship that works best for a patient may change Doctors and patients should choose a “relationship fit” HOW?

33. What is Patient Empowerment? 32

34. Patient Empowerment Empowerment is a concept that has recently emerged in the health scene. It embraces the idea that everyone has the right to make their own choices about their health care because patients are the ones who experience the consequences of both having and treating their illnesses, they have the right to be the primary decision makers regarding their medical conditions 33

35. Patient Empowerment A key part of empowerment is that the patient, personally, must actively search out sufficient information to fully understand their health conditions and their treatment plans Although their physician should be involved in the decision-making process, the final determination of what is best for the patient is both the right and responsibility of the individual patient. 34

36. Why Patient Empowerment? Remember the “patient centered clinical method” Evaluating both the disease and the illness experience Understanding the whole person Finding common ground with the patient about the problem and its management Incorporating prevention and health promotion Enhancing the doctor-patient relationship Being realistic 35

37. Why Patient Empowerment? Only 9% of consultations with surgeons and primary care physicians meet full criteria for informed decision making. Braddock JAMA 1999 Distinguishing elements of shared decision making occurred in 0-11% of audio taped patient interviews with general practitioners. Elwyn 2001 “.. Checking of understanding, and the involving of patients in decision making.. are rarely demonstrated” [in video taped consultations submitted for MRCGP examination]. Campion BMJ 2002 36

38. 37 What is shared decision making?

39. Two definitions of shared decision making: The process of interaction of patients with their health care providers in making health care decisions Involvement of patients with their providers in making health care decisions that are informed by the best available evidence about treatment / screening / illness management options, potential benefits, and harms, and that consider patient preferences. 38

40. What is it? an individual being an active member of his/her disease management team 39 Laura E. Santurri. Patient Empowerment: Improving the Outcomes of Chronic Diseases Through Self-Management Education. http://www.case.edu/med/epidbio/mphp439/Patient_Empowerment.htm

41. 40 Shared decision making combines the measurement of patient preferences with evidence-based practice. evidence-based practice.

42. 41 Why is shared decision making important ?

43. Interventions have different benefits/ risks that patients value differently There is no single right answer for everyone Ethical principle of patient autonomy and legal requirement of informed consent Evidence-based practice movement Increasing realization that an important piece of evidence is missing without the patient’s perspective 42

44. Patients cannot be forced to follow a lifestyle dictated by others. Preventive medicine requires patient empowerment for it to be effective. Patients as consumers have the right to make their own choices and the ability to act on them 43

45. Why is the concentration of power in this relationship with physician? Patient is sick, weak, vulnerable, not feeling fully oneself… Patient may be afraid Patient in a state of dependency Lack of medical knowledge Lack of knowledge on the “system” and how it works Unfamiliar environment 44

46. Why is the concentration of power in this relationship with physician? Education Professional status/authority Knowledge Skills Expertise Experience On familiar territory GATEKEEPER TO HEALTHCARE SYSTEM 45

47. Why Patient Empowerment? “People whose lives are affected by a decision must be a part of the process of arriving at that decision.” John Naisbitt, Megatrends 46

48. Education supporting self care and self-management Offering a choice of providers Sharing treatment decisions 47 How to empower patients

49. Benefits of Patient Empowerment Learning from our patients Taking a proactive role Providing a support & information service to our patients and staff Complaint Resolution Negotiation & Mediation Building trust 48

50. 49 The old model vs. the new

51. Patient says:Doctor responds (Old model)(New model) "I hate this exercise plan." "Then try walking after dinner every night with your husband for 10 minutes "What do you hate about it? What would help you do better at it?" "I don't think I can quit smoking." " Smoking is the leading cause of preventable death..." Why do you think that? What has happened in the past when you tried to quit? What concerns you most when you think about trying to quit ? I haven't been able to test my blood sugar four times a day." "It's hard at first, but just keep trying. You really need to keep track of it." "What is preventing you from doing that? Do you know what the numbers mean?" 50

52. Some useful hints The skilled family physician can spend 10 minute with a patient and the patient feels it was 20 minutes Even the busiest physician can accomplish wonders in a few minutes by indicating that their full attention is on the patient Please conclude every interview with the statement “is their anything else bothering you that we have not discussed?” Rather than assuming that the patient have understood the instructions, ask them to repeat as they understood Use the patients name or ask him what he prefer to be called as Use “how can I help you? Rather than “what brings you here today?” 51

53. 52 Follow-up Management / treatment Presenting concern “patient’s story” History and physical exam Hypothesis Identified problem or diagnosis Identify choices Review pt’s preference for information Present evidence Respond to pt’s ideas, concerns and expectations re: management Assess partnership (review previous steps) DOCTOR - PATIENT COMMUNICATION Establish pt’s role in decision making Agree on an action plan Negotiate a decision Model for Clinical Problem Solving & ISDM Step 1 Step 2 Step 3 Step 4 Step 5 Step 6 Step 7 Step 8 *ISDM: Informed Shared Decision Making

54. Common problems that can lead to poor decisions: Relationships and roles are unclear Objective data are inadequate Values, interests and assumptions are unexplored Too few options have been considered Alternatives are unclear Communication is poor 53

55. What is a "good" health care decision? o Well informed, supported by the best available evidence, weighs pros and cons, compatible with patient's values and practical (Dow, 1999). 54

56. 55 Empowerment allows our relationships to grow in strength

57. 56 “Coming together is a beginning; keeping together is progress; working together is success.” Henry Ford

58. First, they have to be informed. Specifically, they have to be given an objective, unbiased presentation of reasonable options to consider and the pros and cons of those options. Second, once informed, patients have to spend some time to consider their goals and concerns and how each option is likely to play out with respect to those goals and concerns. Third, they have to have an interaction with their providers in which their goals and concerns are shared and incorporated into the decision-making process. 11 For patients to have a meaningful say in their medical decisions, three essential conditions