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

Role & Responsibility of Carers & Patients in Healthcare Delivery & Treatment Decision

VIVIAN TAAM WONGHCE, QMHIHF Congress May 2001

WHAT? HOW? WHO?ExclusionEnd of life decisionsResource related decision

InclusionCognitively Capable Patients/ParentsLife threatening diseasesHealth impeding diseases

WHAT? HOW? WHO?International MovementPreferences - Patient v. DoctorBenefits & RisksDecision Making Models & StagesThe Way Forward

International MovementAmerican College of Physicians patient has a right to self-determinationConsumerism accountable to patients, public, third party payerscaveat emptor (let the buyer beware)World Health Organization patient involvement in care is a social, economic and technical necessityUSA Canadalaws precluding treatment without informed consentlaws requiring doctors to inform patients on treatment options(e.g. breast cancer, prostate cancer)Centre for Health Information Quality UK Promoting Patient Choice - Kings FundJapan paternalism & informed consent

Patients ExpectationDoctor treats one as an individualdoctors 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

Patients want more information & participationHypertension 41% wanted more information 3% self, 19% shared, 47% Dr for decisionAngiogram 98% doctor for problem solving78% self for decision makingMed outpatients 79.5/100 self for information 67/100 self for participationSeizure patients 99% knew benefits of drugs 50% self for final decisionDischarged patients 98% treatment should be discussedPresidents Commission 72% discussed alternativesCancer inpatient 92% wanted information 69% wanted participation

Doctors Different Perception / AttitudeSeizure outpatient 50% self for final decision 33% neurologist / 7% Paediatrician agreed with patientsInpatient & outpatient 10% self for decision making 100% wanted information doctors rarely discussed because only one treatmentHypertension 80% doctor said patient took part / 30% patient agreed 63% doctor made decision / 20% doctor agreed

Patients InhibitionMed Ward doing what is right not getting into trouble

Mother of child with medical problem did not mention greatest concern

Reluctant to ask for further information when they wanted it

Socio-demographic Characteristics & Role PreferenceMore passive roleolderlower level of educationlower social classNo differencemarital statusfamily historytype of presentation

Not helpful in clinical practice

Evidence-based Decision Making - Drs PerspectiveAccurate & unbiased scientific informationMost effective = best treatmentNot choosing most effective treatment is irrationalIt is doctors duty to change patients mind

Evidence-based Decision Making - Patients PerspectivePatients belief, value, fear, illness experience & information about other options affect how information is processed and understoodAverage outcome for aggregate groups may not be personally meaningfulinappropriate to generalize research resultsCorrect choice is individual preference

Benefits of Information Choice /Active Role in Medical Treatmentobese children lost more weightbetter control of BPbetter compliance to drugsmore satisfactionmore alleviation of symptoms?reduce risk of litigation

Benefits of Choice in Breast Cancer Surgeryless 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

Risks of Open Exchangeprovoke anxiety of patientsmore demand on doctorsincreased demand from articulate minority?not cost-effective fees number of patients seen

Predominant Treatment Decision Making ModelsPaternalisticShared decision makingInformed

Paternalistic Model - Assumptionsingle best treatment doctors well-versed in current clinical thinkingdoctors know the best treatment availableconsistently apply this informationdoctors in best position to evaluate trade-offsprofessional concern for welfare of patients legitimate investment in each treatment decision

Paternalistic Model - Cultural ObstaclesPt & Dr expect dominant role for DrStatus difference in terms of education, income, social class also contribute to power differentialIn the decision process, the doctor does not reveal the knowledge & value considered & how they are weighted

Informed Model - Assumptionswith adequate information, patient is capable of making best decisiondoctor should not have an investment in the process and the decision? Doctors bias (different interest & motivation)

Informed Model - Cultural ResistanceThis consumer oriented model emphasizes patient sovereignty and patients rights to make independent autonomous choiceQuill & 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 offerCharles etal 99

Surgeons expect compliance

Shared Decision Making ModelDr & Pt share information with each othernegotiate as equal partnersCreating 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 approachGuadagnoli & Ward 98agreement - greater commitment to the treatmentDr persuade & recommend; listen & understand why patients choose different option

Treatment Decision Making: Analytical Stagesinformation exchangedeliberationdecision on treatment

Information

Paternalistic

Shared

Informed

Flow

One way

Two way

One way

Direction

Dr to Pt

Dr

(

Pt

Dr to pt

(

Type

Medical

Medical & Personal

Medical

Amount

Minimum

All relevant

All relevant

Deliberation

Dr alone or

Dr & Pt &

Pt & potential

with other Drs

potential others

others

Decision

Dr

Dr & Pt

Pt

Charles et al 99

Personal Informationhealth historylife stylesocial context - work familybelief & fear about diseaseknowledge of alternativesreligion

Decision Making Aidsdecision treedecision board & sheet to take home (Levine 92)flip chart with audio tapesinteractive videoshare-decision-making program

Beyond Decision Making Aidsrelationship buildingpatient assesses doctors practice(style, attitude, behaviour)vs his expectationbuilding TRUST

Decision Making RolesAI make final selectionBI make final selection after seriously considering my doctors opinionCDoctor & I share responsibilityDDoctor makes final decision but seriously considers my opinionELeave all decisions to my doctorDegner & Sloan 92

Role Preference Card Sort Procedure5 cards are shuffledpresented with subsets of 2 cardsasked to choose between 2 rolesprocess continues until preference order of all 5 is establishedpreference order recorded e.g. ABCDEBeaver et al 1996 Nurse Intervention StrategyNeufield 93

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

Active

Shared

Passive

Role

A or B

C

D or E

Cancer

20%

28%

52%*

Benigh

23.5%

45.5%

31%

SummaryPatients want more participationMore participation is beneficialShared decision making is the preferred model

The Way Forward Partnership with PatientsHealth 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 degreesEncouraging an active role when it is not desired can result in undue anxiety and stress. If active role is desired, decision support is needed.

Partnership with Patients Skills Needed assess patients information needassess patients decision making preferenceexchange informationidentify treatment options with supporting evidence establish preferencesupport patient to make decision

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