The readiness of oncologists to disclose information to patients with advanced and incurable cancer

Nathan I Cherny

Communication and oncologists

central task challenging source of substantial professional stress

Patients

Distressedimpact of a life-threatening illnesscomplex treatment decisions often limited likelihood of major benefitbalancing hope + realism

Respect for Persons

ethical axiomPersons generally know what is best for

themselves information participation

Disclosure

Disclosure, in this context, refers to the imparting of information necessary to make informed decisions about ongoing care.

The key elements of information necessary for patients to make informed decisions include

the diagnosisthe extent of diseasethe range of therapeutic options availablethe likelihood of benefit from each of the

treatment optionsthe anticipated scope of benefitthe likelihood of adverse effects or harmpotential severity of such adverse effects.

Patient data

Patients vary in the degree to which they want to be medically informed

Western countries: overwhelming majority

non-Western countries: substantial proportion

Not individually predictable by geography, Culture Age Race sex educational level

Family opinions

Multiple studies family members commonly underestimate

the amount of information that patients desire the degree to which they want to be involved in

decision-making

Consnsus

Ethical, medical, psychological, legal (and anthropological

physicians should ask patients about their individual preferences regarding disclosure of information and then act in accordance with the patient's opinion unless there are compelling contraindications.

Reasons for less than full disclosure

Harm

Profiling culturally Age education

requests by family members

professional role expectations

lack of time

personal difficulty in dealing with "bad news" dialogues

Previous Studies of Oncologists

vary substantially in the disclosure practices degree of disclosure with any one patient is highly

influenced by individual factors

Western oncologists more disclosive than those practicing in non-Western countries

other factors sex age training in the communication of bad news frequent requests from family members for nondisclosure

Patient derived data

Even in Western countries patient-derived data indicates disclosure is often less than complete less than patients want

Adverse Consequences of poor communication with lack of disclosure

psychological distress to the patient and their family

unnecessary treatment or overly aggressive treatment costs to the health care system harm to patients

indirect system distress Burnout Stress Conflicts within the health care team

ESMO Survey

To study European Oncologists' attitudes towards information disclosure to

patients with advanced cancerself-reported behaviors in this clinical settingthe factors that influence both attitudes and

behaviors.

Study parameters Demographics

Oncologists attitudes regarding disclosure and information transfer

Self Reported oncologist behaviors in dealing with issues of disclosure request to collude against the patient hard case decision making regarding limited therapeutic options and dwindling

therapeutic options

Local Norms To evaluate the pressures exerted on oncologists to withhold information from

patients or family members

Subjective adequacy training in difficult dialogues

Predictors of Attitude, Behavior The impact of education, attitudes, family and peer expectations, geography and

other demographics on how clinicians approach these complex tasks.

Questions

To what degree does culture effect attitudes and behaviors regarding information disclosure to patients with advanced cancer?

What factors modify this effect?DemographicRigid factorsFactors amenable to intervention

Methodology

Survey tool

focus group of oncologists participating in the Palliative Care Working Group of ESM a survey tool was drafted.

Peer review process for face validity

The final version of the survey Demographics (items 1-7), Requests for collusion (patient and family norms) (item 9) Clinical scenarios (items 8, 10-12), Single items relating to:

information aids (13)enquiries abut emotional issues (14)second opinions (15)divergent opinions (16)

27 attitudes (item 17) 2 Education (1tem 17 embedded) 2 Opinion (17 embedded).

Local normsPerceived Patient Satisfaction

Scoring

Scale Behavior itemsFrequencyLikelihood of use of communication strategy

Attitude itemsStrength of agreement

Disclosive Non-Disclosive+2 +1 0 -1 -2

Survey administration

All members of ESMO were invited to participate (4000 aprox)

The survey was offered online

reminder letters from the ESMO president every 2 weeks over a 2 month period in 2006.

Statistical analyses

Descriptive Demographics Attitudes. Behaviors Norms

Internal validity testing correlation coefficients were calculated Questions relating to

AtitudeClinical BehaviorNormsEducation

Pooling of regions Stepwise regression analyses

were performed to evaluate the factors that contributed ATTITUDE and CLINICAL RESPONSES, SATSFACTION.

RESULTS

Demographics

N=298

Sex: F 81 (2.27%) M 217 (72.8%)

Median age: 42

Median experience: 10-14 years

Practice Type

Private oncology practice 42 14%

Community hospital based 56 18%

Teaching hospital based 114 38%

Comprehensive cancer center 79 25%

Geographic Distribution

Western Europe 112 37.6%

Southern Europe (Mediterranean Europe) 52 17.4%

Eastern Europe 45 15.1%

United States 51.7%

Australasia 51.7%

South America 3913.1%

Middle East 227.4%

Other 16 6%

Proportion of my practice involved with advanced (incurable) cancer

None 1 0.4%

A small proportion 19 6.4%

A substantial proportion 207 69.5%

Most of my practice 71 23.8%

Attitudes

Attitudes items with substantial affirmative consensus (>60% agree or agree strongly)

Attitude items with substantial negative consensus (>60% disagree or disagree strongly)

Attitude items without overall consensus

ATTITUDE summary score

Average of 27 attitude items Scale -2, -1, 0, +1, +2Cronbach’s alpha 0.76

Behaviors

Clinical Behaviors

Who is told (question 8)Responses for requests for non disclosure (question

10)Failing chemotherapy (question

11)Bad prognosis low likelihood of benefit (question 12)

Who is told (Q.8)

Cronbach’s alpha correlation coefficient: 8.1+2 0.62

Responses for requests for non disclosure (Q.10)

Cronbach’s alpha correlation coefficient: 0.79

Failing chemotherapy (Q.11)

Cronbach’s alpha correlation coefficient: (11.2, 3, 4, 5, 6, not 1) 0.53

Bad prognosis low likelihood of benefit (Q12)

Cronbach’s alpha correlation coefficient: (12.1,2, 3, 4, 5, 6, 7 not 8) 0.69

Paternalism/Non-Disclosive CLINICAL BEHAVIOR index

Combined Score of correlated items in the 4 questions

Cronbach’s alpha 0.76

Pooling Regions

Poolability of Regions

ATTITUDES SELF REPORTED CLINICAL BEHAVIORS

Education and Norms

Self Evaluation of Training

I don't feel trained to deal with my patients emotional problems

   

Disgree strongly

Disagree Don’t know

Agree Agree strongly

 

In my oncology training, I

received good training in

breaking bad news

Agree strongly

9 9 0 1 0 19

Agree 13 59 15 8 1

95

Don’t Know

2 13 12 6 0

33

Disagree 10 37 16 22 0

85

Disagree strongly

4 16 0 14

4 48

39 134 52 51 4Cronbach alpha 0.5Spearman P=0.3Average interitem covariance: 0 .340

Scale reliability coefficient: 0.4790

Cognitive

Affective

Cultural Norms

What is expected by patient and familyWhat is expected by peers

Requests for non disclosure

Requests by patients to withhold information re diagnosis or prognosis from family; Uncommon 3-5%

Requests by family to withhold information from patient more common in non-Western Counties

p<0.000

p<0.000

Cronbach alpha 0.9034Spearman 0.82Average interitem covariance: .8243283

Scale reliability coefficient: 0.9034

Peer Expectations (Professional Norm)

P<0.0000

Multivariate analyses

Stepwise Regression

1. Attitudes

2. Behaviors

3. Physician assessed patient satisfaction

Multivariate Regression analysis for ATTITUDES

Model Age Sex Year experience Work setting Proportion of work dealing with advanced cancer Region Frequency of families requesting non-disclosure (Q9.3+4) Perceived professional norm (Q 17.9) Perceived quality of education in disclosure bad news (Q17.24)

Factors contributing to ATTITUDES

Coef. Std.

Err. t [95% Conf. Interval] P

Local Norm Paternalism -0.128 0.016 7.95 -0.096 -0.159 <0.0000

Region WEST 0.077 0.044 1.73 -0.011 0.164 0.0002

TRAINING 0.064 0.018 3.58 0.029 0.099 0.0042

High exposure to pts wit Adv Cancer 0.091 0.03 2.99 0.031 0.151 0.0078

Age -0.004 0.002 -2.26 -0.007 0 0.0276

FAMILY REQUESTS -0.044 0.022 -2.03 -0.087 -0.001 0.0402

R-squared = 0.4412

Multivariate Regression analysis for BEHAVIORS

Model Age Sex Year experience Work setting Proportion of work dealing with advanced cancer Region ATTITUDES summary score Frequency of families requesting non-disclosure (Q9.3+4) Perceived professional norm (Q 17.9) Perceived quality of education in disclosure bad news (Q17.24)

Factors contributing to Self reported BEHAVIORS

       

Coef.

Std. Err. t [95% Conf. Interval] P

Local Norm Paternalism -0.164 0.021 7.91 -0.123 -0.204 <0.0000

ATTITUDES 0.583 0.073 8.02 0.440 0.726 <0.0000

FAMILY REQUESTS -0.082 0.025-

3.31 -0.132 -0.034 0.0008

High exposure to pts wit Adv Cancer 0.079 0.037 2.15 0.007 0.152 0.0306

R-squared = 0.6324

Multivariate Regression analysis for MD ASSESSED PATIENT SATISFACTION

Model Age Sex Year experience Work setting Proportion of work dealing with advanced cancer Region ATTITUDES summary score Frequency of families requesting non-disclosure (Q9.3+4) Perceived professional norm (Q 17.9) Perceived quality of EDUCATION in disclosure bad news

(Q17.24)

Multivariate Regression analysis for PERCIEVED PATIENT SATISFACTION

Model Age Sex Year experience Work setting Proportion of work dealing with advanced cancer Region ATTITUDES summary score Frequency of families requesting non-disclosure (Q9.3+4) Perceived professional norm (Q 17.9) Perceived quality of EDUCATION in disclosure bad news

(Q17.24)

R-squared only 0.07!!!!

Major findings

Individual clinicians generally display range of responses including disclosive and non disclosive behaviors

Culture is an important determinant of default behaviors but its impact is tempered by other important factors

1. Local professional norms (may be independent of culture)

2. Training in disclosure communication3. Experience4. Age (youth)

In non Western countries about 25-30% of clinicians are extremely non disclosive

Derived Model for Non-Disclosive Clinical Behaviors

Attitudes

Family Requests

BehaviorsEducation

Culture

Local professional norms

Involvement

Age

Factors amenable to modification

Attitudes

Family Requests

BehaviorsEducation

Culture

Local professional norms

Involvement

Age

Implications

Factors which may reduce likelihood of non disclosureNuanced appreciation of culture in patient

preferencesStrong local professional normsEducationInsight on bias from profiling

Summary

The Data from the survey help clarify the relationship between culture and non-disclosive and paternalistic practices.

The influence of culture is mediated through other factors.

Consistent with anthropological and social psychology data

Supports thesis of cultural relativism rather than ethical relativism