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 - Kings Fund
• Japan paternalism informed consent

5
Patients Expectation

• Doctor treats one as an individual
• doctors ability and willingness to contextualize
  the decision-making process by framing the
  discussion in terms of each patients 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
• Presidents Commission 72 discussed
  alternatives
• Cancer inpatient 92 wanted information
• 69 wanted participation

7
Doctors 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
Patients 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 - Drs Perspective

• Accurate unbiased scientific information
• Most effective best treatment
• Not choosing most effective treatment is
  irrational
• It is doctors duty to change patients mind

11
Evidence-based Decision Making - Patients
Perspective

• Patients 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
• ? Doctors 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

22
(No Transcript)
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 doctors 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 doctors 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 CD

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 patients information need
• assess patients 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 Kings Fund Centre