Patient-Centered Communication

During Cancer Care:

Preventing Breakdowns and
Mitigating Harm
Kathleen Mazor EdD
Meyers Primary Care Institute
University of Massachusetts Medical School

Funded by
NCI grant P20 CA137219

Collaborators
Thomas Gallagher, MD
Gwen Alexander, PhD
Neeraj Arora, PhD
Renee Beard, PhD
Josephine Calvi, MA
Cassie Firneno, BA
Bridget Gaglio, PhD
Katherine Horner, MPH
Sarah Greene, MPH
Celeste Lemay, RN, MPH

Vanessa Neergheen, BA
Carolyn Prouty, DVM
Borsika Rabin, PhD
Douglas Roblin, PhD
Brandi Robinson, MPH
Richard Street, PhD
Valerie Sue, PhD
Kathleen Walsh, MD
Andrew Williams, PhD

Overview
Patient perceptions of problematic events,
impact, and response
Drill down: apology and disclosure
Measuring patient-centered
communication over the course of
cancer care

Towards Patient-Centered Cancer Care:

Patient Perceptions of Problematic Events,
Impact, and Response
Cancer diagnosis life changing
Care is complex, treatments toxic
Errors likely to occur, cause distress
Delayed diagnosis common reason for
litigation
Important to understand the patients
perspective on errors

JCO, 2012

Methods

Identified patients with cancer diagnosis

Breast or gastro-intestinal cancer
6-18 months post-treatment
3 Cancer Research Network sites
Screening
Something went wrong
Preventable
Caused (or could have caused) harm
Medical Records not reviewed

In-Depth Telephone Interviews

What went wrong
The impact of the event
How clinicians responded
How patient responded

Results
Patient Characteristics [Ns]
N=78
Breast cancer

71

Gastrointestinal cancer

Age (mean)

58y

Female

75

White

55

African American

18

>4 yr college

44

~1,200 pages of interview text

Digital recordings transcribed
Questions -> preliminary codes
Additional themes and subthemes
identified via review
3 readers per transcript
12 coders; 10% double coded

Something Went Wrong

Of

416 patients screened:

22% identified an eligible event

Of

78 patients interviewed:

28% reported breakdown in medical care

47% reported communication breakdown
24% reported both

Breakdowns in Medical Care

Delayed

diagnosis
Delay in treatment
Treatment approach too aggressive
Surgery botched
Infection
IV incorrectly inserted
Insufficient care

Delayed Diagnosis
all along shes saying, Oh its not cancer.
Its not cancer. and then all of the
sudden it is cancer. And then, Oh dont
worry; its not in the nodes. Its in the
nodes now. Everything that they said, Oh
dont worry about; youll drive yourself
crazy if you think about these things, it
came to be. And I trusted them.

Communication Breakdowns
Information

Exchange

Insufficient information
Inaccurate information
Not listening
Providers

Manner

Cold, uncaring
Insensitive

Information
Once they did the biopsy I got a phone call

from a lab person that simply said they were

calling to tell me that I had breast cancer. And
I, obviously, was very upset. I asked her some
questions. She said she was unable to answer
anything. And I felt devastated that a
person would call me without being able
to give me more information.

Information
I feel like it shouldnt have happened
[neuropathy] because I should have been
aware of the treatment to take during
my chemotherapy that would have
prevented it. its kind of an anger that
this is not something that should have
happened.

Information
She put me through hell for all those
weeks and she was wrong, totally wrong. And I
wasnt dying. And it wasnt big. And I just cant
believe that a doctor would call someone at
work and give them that kind of information
and not having the facts. Unless you know for
damn sure what youre talking about, you do
not tell somebody to get their will in order.

Manner
My expectation was that I would be
able to discuss, when I had a question.
and not like, Youre not listening to
me. If you had listened to me, you
wouldnt have had this question. I did
not expect that at all. It was really
pretty humiliating for me.

Manner
I felt like it was more or less like I was
being treated like a specimen or
a guinea pig
Its not personalized; its just Im going
through the line like cattle

Manner
I feel like theyre just like, youre not
dying, stop whining
I felt let down. I felt likeI was just a
number to them. I felt like they were
saying you want special care and, honey,
we just dont give it. We just dont give it
that way

Medical Care &

Communication
Poor information exchange exacerbating
delays in diagnosis, treatment
Infections and post-surgery complications
exacerbated by clinicians unresponsiveness
to patients reports of problems
Insufficient information impaired decisionmaking; contributed to poor outcome, pain

Impact
96% Emotional / psychological harm
58% Physical harm
58% Negative impact on family
53% Damaged relationship w/ provider
39% Life disruption
37% Uncompensated financial costs

Some suffer in silence

Focused on beating cancer; future
Fear consequences

For patient
For provider

Uncertain

how to report
Expect no impact

Why encourage speaking up?

Patients

may harbor misconceptions

Diagnosis may have been timely

Harm might not have been preventable
Cant

fix what we dont know about

Patients do have information, insights

These could lead to system improvements

Drill Down: Apology and

Disclosure
Most providers did not
Provide an explanation
Apologize, express regret
Acknowledge responsibility
Commit to preventing recurrences
Only 14% of patients
reported at least one element
PEC 2013

Explanation
Patients

want to know

What happened
That those involved recognize that

something went wrong

Patients want to hear: Im so sorry I said this

to you. I really should have waited until we
had more information.

Apology, Regret, Caring

Is

valued
Can recognize patients experience
what I really wanted was someone to care,
to say Oh, Im so sorry

What worked
[she] did the right thing. She acknowledged
that Id been through a pretty terrible
experience..
..she [the PCP] was sad too. She was in
congruence with my emotions. She wasnt
trying to pretend that nothing had
happenedThat made a huge difference.

Assuming Responsibility
Demonstrates

awareness of event
Strengthens trust, relationship
Is evidence of learning

Patients on responsibility
taking

responsibility, thats kind of what

its all about

he

didnt really admit to it anyway.

You know, you can apologize, but if youre
not saying that you did something
wrong

Preventing Recurrences
System-level

Patients less focused on system

Individual-level

Learning is critical
Learning from current error
Not repeating past errors

One patient on preventing

recurrences
It

goes a long way for me if a person

can acknowledge I made a mistake.
And it goes even further for me if they
say what they are going to do
differently.

What patients want to hear

Ill

make my best effort to become more

educated about this.

Ive
Im

learned something from this

sorry that happened, it has never

happened to me before.

Actions Trump Words

If

youre going to apologize and youre not

going to fix anything, thats just insulting my
intelligence

Theres

got to be accountability. I dont

want to hear Im sorry. Im sorry is
nothing. I want to know what steps have
you taken to correct the problem.

What patients want to hear

Lets

go and find out what happened

here and take care of it

What

can we do to fix this? How can

we make it right?

What about the money?

Most

patients did not refer to money

Some wanted:
co-payments waived
other costs reimbursed

Recommendations
Encourage

patients to voice concerns

Be forthcoming with information
Show remorse, empathy, caring
Acknowledge responsibility
Show learning; prevention efforts
Seek to understand, appreciate the full
impact of the event
Match response to patient needs

Measuring patient-centered
communication over the course of
cancer care
Need

to ask patients
Consider entire course of care
Be specific (for feedback)
Be meaningful to patients
Explicitly ask about problems
Where we fell short

Six Function Model

Fostering healing relationships
Exchanging information
Responding to emotions
Making decisions
Enabling patient self-management
Managing uncertainty

Stages of Cancer Care

Since

cancer suspected through present

Diagnosis
Decision making about treatment
Surgery
Radiation therapy
Chemotherapy
After treatment completed

Survey Methods
Sample
Online panel
25,668 people, across the country

Eligibility
Ever diagnosed with cancer

Items
Six functions x stages of care
Overall

Items
Specific

communication goals within

each stage of care
I got the information I needed, when I

needed it.
I was told I had cancer in a way that was
sensitive and caring.
The doctors and nurses listened to what I
had to say about how the radiation
treatments were affecting me.

Items (continued)
Overall

ratings of each stage of care,

and all care to present
Overall, how would you rate your

experiences with communication when you

were diagnosed with cancer?

If

less than Excellent:

Where did we fall short?

Results
7,000

invited (random sample)

2,934 started
2,334 no cancer history
375 completed the survey
63% of those probably eligible

Results

Results

N = 302 to 341

Results
Radiation
Help coping with difficult feelings
Right information on side effects
Right information on what to expect
Consistent information
Care team listened to what I had to say
Right information on how to care for self
Knew who to contact with questions
Felt optimism from care team
Doctors and nurses worked as a team
Respected wish to try other treatments
0

10

20

30

40

50

60

70

80

90

100

Percent "Always"

N = 64 to 102

Results
Chemotherapy
Help coping with difficult feelings
Right information on what to expect
Right information on side effects
Right information on how to care for self
Consistent information
Doctors and nurses worked as a team
Felt optimism from care team
Knew who to contact with questions
Care team listened to what I had to say
Respected wish to try other treatments
0

10

20

30

40

50

60

70

80

90

100

Percent "Always"

N = 61 to 96

Results

N = 212 to 313

Where We Fell Short

Detection

Diagnosis

Treatment

Survivorship

Opportunities
Communication

for use

items are available

Manuscript in preparation

CRN

encourages collaborations

crn.cancer.gov

Thank you!
Kathy.mazor@meyersprimary.org

References
Mazor KM, et al. Towards Patient-Centered Cancer Care: Patient perceptions of
problematic events, impact, and response. Journal of Clinical Oncology. 2012; 30(15);
1784-1790.
Mazor KM, et al. More than Words: Patients Views on Apology and
Disclosure When Things Go Wrong in Cancer Care. Patient Education and
Counseling. 2013: 90-341-346
Epstein RM and Street RL. ,Jr. Patient-centered communication in cancer care
Promoting healing and reducing suffering. NCI, NIH publication #07-6225,
Bethesda MD, 2007 http://www.outcomes.cancer.gov/areas/pcc/communication

Photos courtesy of the web site of the National Cancer Institute

(http://www.cancer.gov).