Mixed Methods Research in Practice:Communication about Prognosis in

Intensive Care Units

Douglas B. White, MD, MAS

Assistant Professor

Division of Pulmonary and Critical Care Medicine

Investigator, UCSF Program in Medical Ethics

Overview

Background (brief) Aims & Study Methods Practical Issues

Research on family members of dying patients Training research coordinator Data management

Methodological issues Why mixed methods? Why grounded theory?

Co-Investigators

Bernard Lo, MDDirector, UCSF Program in Medical EthicsResearch: Physician-patient communication; decision-making.

Ken Covinsky, MD, MPH Director, Geriatrics Research Training ProgramResearch: determinants of prognosis in community dwelling elders;

Anita Stewart, PhD John M. Luce, MD Randy Curtis MD, MPH Seth Landefeld, MD

An Example

Previously healthy 71-year man admitted to the ICU with a large stroke. He develops severe pneumonia w/ resp failure, sepsis and renal failure.

Aphasic, R hemiparesis APACHE II: 35; In-hospital mortality 70% Significant functional impairment Patient decisionally incapacitated

Should life support be continued?

Surrogate decision-making No clear “right” medical answer Preference-sensitive decision

Why study communication of prognosis?

1. Patients/Families have: A right to know

• autonomy & informed DM

A need to know• Prognostic info affects treatment choices

2. Prognostic misunderstandings are common

I Shouldn't Have Had To Beg for a PrognosisWith all the conflicting reports on his health, I didn't know if he was holding steady or dying.

Aug. 22, 2005 issue - I was once a stalker. My victims—yes, there were several—were high on the social scale, but they were not celebrities. They were doctors.…

What causes misunderstandings about prognosis?

Little empirical research about mechanisms Poor MD communication skills? No information from physicians? Optimism bias in MD communication? Optimism bias by families? Lack of trust in physicians? Low health literacy/numeracy? Different attitudes about predicting future?

The Structure-Process-Outcome Paradigm: Prognosis Communication in the ICU

Process of care:- # prognosis discussions- Content of discussion

Outcome MD-family agreementre: prognosis

Family characteristics:- literacy/numeracy- optimism- depression- prior experiences-trust in physician-Beliefs about future telling

Physiciancharacteristics:-Demographics-Skills - Attitudes

What causes misunderstandings about prognosis?

How do surrogates arrive at an understanding of a patients’ prognosis?

-what sources of information?

-cultural/religious influence?

-attitudes about prognostication?

Specific AimsProject 1

Aim 1: To determine the prevalence and predictors of misunderstandings about prognosis between physicians and family of ICU patients at high risk for death.

Aim 2: To determine what factors contribute to families’ assessment of a patients’ prognosis.

K12 Project 1- Study Design

Design: Cross sectional study Setting: 4 ICUs at UCSF (60 ICU beds) Subjects:

175 ICU patients at high risk of death Attending MDs Family decision-maker(s)

Measurements: Questionnaires from MDs & family members Chart review Audiotaped interview with family members

K12 Project 1- Subjects

Eligible Patients: Lack decision-making capacity Mechanically ventilated ≥ 3 days and ≤5 days 40% mortality predicted mortality (APACHE II)

Why study these patients?

K12 Project 1- Subjects

Eligible family decision-maker(s): Traditional hierarchy of surrogates is inadequate

Question to family: “Who would be involved in DM if patient couldn’t participate?”

Potential for multiple respondents per patient

Physician: Primary Attending Physician

Recruitment & Data Collection Strategy

Daily screening RA identifies pts intubated for 72 hours calculates APACHE scores

1. 1st Contact- Attending MD Oral consent/permission to approach family Answer prognosis questions by phone Complete written questionnaire

Recruitment & Data Collection Strategy

Contact with Family 30 minute questionnaire 20 minute semi-structured interview (audiotaped) Conducted in private room adjacent to ICUs

0% chance of survival

100% chance

of survival

1.What do you think are the chances that the patient will survive this hospitalization if the current treatment plan is continued? Place a mark on the line…

0% chance of survival

100% chance of

survival

Outcome Measure- Prognostic Discordance

0% chance of survival

100% chance

of survival

1.What do you think the doctor thinks are the chances that the patient will survive this hospitalization if the current treatment plan is continued? Place a mark on the line…

Outcome Measure- Prognostic Discordance

Measurements- Physician

Predictors Demographics (age, gender, race) Specialty Self-rated skill:

• Communicating prognosis to family

• End of life communication skills

Attitudes about: • Prognostication

• Involving family in decision-making

Measurements- Family

Predictors Literacy Numeracy Desire for information Preferred Role in DM Depression Locus of Control Dispositional Optimism Prior EOL DM experience

Statistical Plan- Phase 1

Overarching goal: To identify factors associated with overly optimistic prognostic estimates by family.

Approach: multivariate analysis logistic regression or linear regression mixed effects modeling (2 levels of clustering) include factors with p≤0.20 on bivariate

Aim 2: To determine what factors contribute to families’ assessment of a patients’ prognosis.

Semistructured interviews with family RA shows family the recorded prognostic estimate and

asks:

1) “What has made you think this is your loved ones’ chance of surviving?” -follow up probes

2) “I notice this is your prognostic estimate, but that this is what you think the MD thinks the prognosis is. Can you tell me why they’re different?”

Aim 2: To determine what factors contribute to families’ assessment of a patient’s prognosis.

Analysis:

-transcription by trained qualitative transcriptionist

-multidisciplinary coding team

-Grounded theory approach to inductively develop a conceptual framework

-multiple investigator meetings

-Member checking

Expectations- Project 1

1. Quantitative determination of predictors of discordance

2. Qualitative understanding of how family members make an assessment of patient’s prognosis.

3. Reasons that family hold systematically different view of prognosis than physician.

K12 Project 2:

Audiotaped Discussions about Prognosis

Specific AimsProject 2

Aim 3: To determine how physicians communicate with surrogates of ICU patients about prognosis.

Aim 4: To identify communication strategies that are associated with physician-family concordance about prognosis.

Qualitative Data Analysis:Coding Strategy

Development of framework: Inductive process Grounded Theory approach Develop categories of prognosis

Preliminary framework: 5 investigators analyzed prognostic statements from

same 5 conferences each developed framework Multiple investigator meetings developed

consensus regarding framework

Sample coding

“I’m really concerned about your father’s future.

His chances of surviving this hospitalization are poor.

When I say that, I mean maybe 80% of people in your Dad’s situation don’t survive.

Even if he did survive, his quality of life would be poor.”

General

Survival

Survival

QOL

K12 Study Design- Project 2

Design: (Nested) cross-sectional study

Subjects: N=60 subset of the 175 physician-family pairs from Project 1

Measurements: Audiotaped MD-family discussion Questionnaires from MDs & family members Outcome: understanding of prognosis after discussion

Recruitment

Daily screening By RA bedside nurse: “Is a family meeting

planned for today?”

1. 1st Contact- Attending MD* Oral consent/permission to approach family Consent from MD and all family

*probable clustering

Data Collection Strategy

Before MD-Family MeetingFamily prognostic estimate

Audiotape the meeting

After MD-Family MeetingMD prognostic estimateFamily prognostic estimateFamily satisfaction with communication

Outcome Measure- Discordance Score

Family Pessimistic Family Optimistic

-100 -90 -80 -70 -60 -50 -40 -30 -20 -10 10 20 30 40 50 60 70 80 90 100

No Discordance

Data Analysis

Possible Predictors number/type prognostic statements Language used to communicate risk MD behaviors (assessing desire for prog info and

understanding) Family behaviors (questions, explicit statement of

prognosis, disagreement) Family satisfaction w/ communication