Kathleen Mazor EdD

Meyers Primary Care Institute University of Massachusetts Medical School

Patient-Centered Communication During Cancer Care:

Preventing Breakdowns and Mitigating Harm

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 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 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 decision-making; 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 learned something from this Im 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

PresenterPresentation NotesI was told I had cancer in a way that was sensitive and caring My cancer care team helped me cope with the uncertainty or unknowns about my diagnosis Soon after I was told I had cancer, I knew what would happen next, and what decisions I would face Soon after I was told I had cancer, someone was available to answer my questions about my diagnosis and next steps The person who told me I had cancer was the right person to tell me

Results

0 10 20 30 40 50 60 70 80 90 100

Respected wish to try other treatments

Doctors and nurses worked as a team

Felt optimism from care team

Knew who to contact with questions

Right information on how to care for self

Care team listened to what I had to say

Consistent information

Right information on what to expect

Right information on side effects

Help coping with difficult feelings

Percent "Always"

Radiation

N = 64 to 102

Results

0 10 20 30 40 50 60 70 80 90 100

Respected wish to try other treatments

Care team listened to what I had to say

Knew who to contact with questions

Felt optimism from care team

Doctors and nurses worked as a team

Consistent information

Right information on how to care for self

Right information on side effects

Right information on what to expect

Help coping with difficult feelings

Percent "Always"

Chemotherapy

N = 61 to 96

Results

N = 212 to 313

Where We Fell Short

Detection Diagnosis Treatment Survivorship

Opportunities

Communication items are available for use 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.

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

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

Photos courtesy of the web site of the National Cancer Institute (http://www.cancer.gov).

Slide Number 1Funded byCollaboratorsOverviewTowards Patient-Centered Cancer Care: Patient Perceptions of Problematic Events, Impact, and ResponseMethodsIn-Depth Telephone InterviewsResultsPatient Characteristics [Ns]~1,200 pages of interview textSomething Went WrongBreakdowns in Medical CareDelayed DiagnosisCommunication BreakdownsInformationInformationInformationMannerMannerMannerMedical Care & Communication ImpactSome suffer in silence Why encourage speaking up?Drill Down: Apology and Disclosure ExplanationApology, Regret, CaringWhat workedAssuming ResponsibilityPatients on responsibilityPreventing RecurrencesOne patient on preventing recurrencesWhat patients want to hearActions Trump WordsWhat patients want to hearWhat about the money?RecommendationsMeasuring patient-centered communication over the course of cancer careSix Function ModelStages of Cancer CareSurvey MethodsItemsItems (continued)ResultsResults ResultsResultsResultsResultsWhere We Fell ShortOpportunitiesSlide Number 51References