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 Distressed  impact of a life-threatening illness  complex treatment decisions  often limited likelihood of major benefit  balancing hope + realism

Respect for Persons ethical axiom Persons 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 diagnosis the extent of disease the range of therapeutic options available the likelihood of benefit from each of the treatment options the anticipated scope of benefit the likelihood of adverse effects or harm potential 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 cancer  self-reported behaviors in this clinical setting  the 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?  Demographic  Rigid factors  Factors 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 norms Perceived Patient Satisfaction

Scoring Scale Behavior items  Frequency  Likelihood of use of communication strategy Attitude items  Strength of agreement Disclosive Non-Disclosive

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 Atitude Clinical Behavior Norms Education 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: years

Practice Type Private oncology practice4214% Community hospital based5618% Teaching hospital based11438% Comprehensive cancer center7925%

Geographic Distribution Western Europe % Southern Europe (Mediterranean Europe)5217.4% Eastern Europe % United States 51.7% Australasia51.7% South America3913.1% Middle East227.4% Other166%

Proportion of my practice involved with advanced (incurable) cancer None10.4% A small proportion196.4% A substantial proportion % Most of my practice7123.8%

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, +2 Cronbach’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:

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 DisagreeDon’t know AgreeAgree strongly In my oncology training, I received good training in breaking bad news Agree strongly Agree Don’t Know Disagree Disagree strongly Cronbach alpha 0.5 Spearman P=0.3 Average interitem covariance: Scale reliability coefficient: Cognitive Affective

Cultural Norms What is expected by patient and family What 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 Cronbach alpha Spearman 0.82 Average interitem covariance: Scale reliability coefficient:

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 < Region WEST TRAINING High exposure to pts wit Adv Cancer Age FAMILY REQUESTS R-squared =

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 < ATTITUDES < FAMILY REQUESTS High exposure to pts wit Adv Cancer R-squared =

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 communication 3.Experience 4.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 Behaviors Education Culture Local professional norms Involvement Age

Factors amenable to modification Attitudes Family Requests Behaviors Education Culture Local professional norms Involvement Age

Implications Factors which may reduce likelihood of non disclosure  Nuanced appreciation of culture in patient preferences  Strong local professional norms  Education  Insight 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