2014 06 09 Mazor Texas Ace Final

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 patient’s
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

7

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
 1–2 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 she’s saying, “Oh it’s not cancer.
It’s not cancer. …” and then all of the
sudden it is cancer. And then, “Oh don’t
worry; it’s not in the nodes.” It’s in the
nodes now. Everything that they said, “Oh
don’t worry about; you’ll 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
 Provider’s

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 shouldn’t have happened
[neuropathy] because I should have been
aware of the treatment to take during
my chemotherapy that would have
prevented it. … it’s 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
wasn’t dying. And it wasn’t big. And I just can’t
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 you’re 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, ‘You’re not listening to
me. If you had listened to me, you
wouldn’t 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”
“It’s not personalized; it’s just I’m going
through the line like cattle”

Manner
“I feel like they’re just like, “you’re not
dying, stop whining”
“I felt let down. I felt like…I was just a
number to them. I felt like they were
saying “you want special care and, honey,
we just don’t give it. We just don’t give it
that way”

Medical Care &
Communication
Poor information exchange exacerbating
delays in diagnosis, treatment
 Infections and post-surgery complications
exacerbated by clinician’s unresponsiveness
to patient’s 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
 Can’t

fix what we don’t 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: “I’m so sorry I said this
to you. …I really should have waited until we
had more information.”

Apology, Regret, Caring
 Is

valued
 Can recognize patient’s experience
“…what I really wanted was someone to care,
to say ‘Oh, I’m so sorry’…”

What worked…
“[she] did the right thing. She acknowledged
that I’d been through a pretty terrible
experience..”
“..she [the PCP] was sad too. She was in
congruence with my emotions. She wasn’t
trying to pretend that nothing had
happened…That made a huge difference.”

Assuming Responsibility
 Demonstrates

awareness of event
 Strengthens trust, relationship
 Is evidence of learning

Patients on responsibility…
 “taking

responsibility, that’s kind of what
it’s all about”

 “…he

didn’t really admit to it anyway.
You know, you can apologize, but if you’re
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…
 “I’ll

make my best effort to become more
educated about this.”

 “I’ve
 “I’m

learned something from this”

sorry that happened, it has never
happened to me before.”

Actions Trump Words
 “If

you’re going to apologize and you’re not
going to fix anything, that’s just insulting my
intelligence”

 “There’s

got to be accountability. I don’t
want to hear ‘I’m sorry’. I’m sorry is
nothing. I want to know what steps have
you taken to correct the problem.”

What patients want to hear…
 “Let’s

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!
[email protected]

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).