WHAT TO TREAT? HOW TO TREAT? WHO SHOULD DECIDE?

1. WHAT TO TREAT?HOW TO TREAT?WHO SHOULD DECIDE? Role & Responsibility of Carers & Patients in Healthcare Delivery & Treatment Decision VIVIAN TAAM WONG HCE, QMH IHF Congress May 2001

2. WHAT? HOW? WHO? Exclusion • End of life decisions • Resource related decision Inclusion • Cognitively Capable Patients/Parents • Life threatening diseases • Health impeding diseases

3. WHAT? HOW? WHO? International Movement Preferences - Patient v. Doctor Benefits & Risks Decision Making Models & Stages The Way Forward

4. International Movement • American College of Physicians patient has a right to self-determination • Consumerism • accountable to patients, public, third party payers • caveat emptor (let the buyer beware) • World Health Organization patient involvement in care is a social, economic and technical necessity • USA Canada • laws precluding treatment without informed consent • laws requiring doctors to inform patients on treatment options (e.g. breast cancer, prostate cancer) • Centre for Health Information Quality UK Promoting Patient Choice - King’s Fund • Japan paternalism & informed consent

5. Patient’s Expectation • Doctor treats one as an individual • doctor’s ability and willingness to contextualize the decision-making process by framing the discussion in terms of each patient’s unique background characteristics and life experience Charles et al 1999

6. Patients want more information & participation Hypertension — 41% wanted more information 3% self, 19% shared, 47% Dr for decision Angiogram — 98% doctor for problem solving 78% self for decision making Med outpatients —79.5/100 self for information 67/100 self for participation Seizure patients — 99% knew benefits of drugs 50% self for final decision Discharged patients — 98% treatment should be discussed President’s Commission — 72% discussed alternatives Cancer inpatient — 92% wanted information — 69% wanted participation

7. Doctor’s Different Perception / Attitude Seizure outpatient — 50% self for final decision 33% neurologist / 7% Paediatrician agreed with patients Inpatient & outpatient — 10% self for decision making 100% wanted information doctors rarely discussed because only one treatment Hypertension — 80% doctor said patient took part / 30% patient agreed — 63% doctor made decision / 20% doctor agreed

8. Patient’s Inhibition Med Ward — “doing what is right” “not getting into trouble” Mother of child with medical problem — ¼ did not mention greatest concern Reluctant to ask for further information when they wanted it

9. Socio-demographic Characteristics & Role Preference More passive role • older • lower level of education • lower social class No difference • marital status • family history • type of presentation Not helpful in clinical practice

10. Evidence-based Decision Making - Dr’s Perspective • Accurate & unbiased scientific information • Most effective = best treatment • Not choosing most effective treatment is “irrational” • It is doctor’s duty to change patient’s mind

11. Evidence-based Decision Making - Patient’s Perspective • Patient’s belief, value, fear, illness experience & information about other options affect how information is processed and understood • Average outcome for aggregate groups may not be personally meaningful • inappropriate to generalize research results • “Correct” choice is individual preference

12. Benefits of Information Choice /Active Role in Medical Treatment • obese children lost more weight • better control of BP • better compliance to drugs • more satisfaction • more alleviation of symptoms ? reduce risk of litigation

13. Benefits of Choice in Breast Cancer Surgery • less depression & loss of self esteem • less anxiety depression & sexual dysfunction (12m) no different at 3 years • higher level of life satisfaction (3m) no different at 6m, 12m • less depression, anxiety (before surgery, 2m) no different at 4m • mastectomy — no different lumpectomy — more depressed, distressed, angry

14. Risks of Open Exchange • provoke anxiety of patients • more demand on doctors • increased demand from articulate minority ? not cost-effective   fees  number of patients seen

15. Predominant Treatment Decision Making Models • Paternalistic • Shared decision making • Informed

16. Paternalistic Model - Assumption • single best treatment doctors well-versed in current clinical thinking • doctors know the best treatment available consistently apply this information • doctors in best position to evaluate trade-offs • professional concern for welfare of patients  legitimate investment in each treatment decision

17. Paternalistic Model - Cultural Obstacles • Pt & Dr expect dominant role for Dr • Status difference in terms of education, income, social class also contribute to power differential • In the decision process, the doctor does not reveal the knowledge & value considered & how they are weighted

18. Informed Model - Assumptions • with adequate information, patient is capable of making best decision • doctor should not have an investment in the process and the decision • ? Doctor’s bias (different interest & motivation)

19. Informed Model - Cultural Resistance “This consumer oriented model emphasizes patient sovereignty and patients’ rights to make independent autonomous choice” Quill & Brody 96 “This is difficult for doctors to accept since it runs counter to decades of professional medical training and practice in which clinical experience, expertise and knowledge have been assumed to be the quintessential skills that doctors have to offer” Charles etal 99 “Surgeons expect compliance”

20. Shared Decision Making Model • Dr & Pt share information with each other • negotiate as equal partners “Creating a safe environment for the patient so that she feels comfortable in exploring information and expressing opinion is probably the highest challenge for the Dr who want to practice a shared approach” Guadagnoli & Ward 98 • agreement - greater commitment to the treatment Dr persuade & recommend; listen & understand why patients choose different option

21. Treatment Decision Making: Analytical Stages • information exchange • deliberation • decision on treatment

23. Personal Information • health history • life style • social context - work family • belief & fear about disease • knowledge of alternatives • religion

24. Decision Making Aids • decision tree • decision board & sheet to take home (Levine 92) • flip chart with audio tapes • interactive video • share-decision-making program

25. Beyond Decision Making Aids • relationship building • patient assesses doctor’s practice (style, attitude, behaviour) vs his expectation • building TRUST

26. Decision Making Roles A I make final selection B I make final selection after seriously considering my doctor’s opinion C Doctor & I share responsibility D Doctor makes final decision but seriously considers my opinion E Leave all decisions to my doctor Degner & Sloan 92

27. Role Preference Card Sort Procedure • 5 cards are shuffled • presented with subsets of 2 cards • asked to choose between 2 roles • process continues until preference order of all 5 is established • preference order recorded e.g. ABCDE Beaver et al 1996 Nurse Intervention Strategy Neufield 93

28. Distribution of Preferences *65% of cancer chose C+D

29. Summary • Patients want more participation • More participation is beneficial • Shared decision making is the preferred model

30. The Way Forward Partnership with Patients • Health professionals need to be aware that patients have preferences. This will facilitate more effective communication. • Doctors should try to engage ALL patients in decision making, albeit at varying degrees • Encouraging an active role when it is not desired can result in undue anxiety and stress. If active role is desired, decision support is needed.

31. Partnership with Patients Skills Needed • assess patient’s information need • assess patient’s decision making preference • exchange information • identify treatment options with supporting evidence • establish preference • support patient to make decision

32. Partnership with Patients “Patients want honest, unbiased, up to date information about their illness, its likely outcome, and the risks and benefits of different interventions. They also want help to identify and secure their treatment preferences. When uncertainty exists it should be discussed, not omitted or glossed over, and advice should be explicitly supported by the best available evidence.” Dr. Angela coulter Director of King’s Fund Centre