2014 06 09 Mazor Texas Ace Final
-
Upload
danonino12 -
Category
Documents
-
view
216 -
download
0
description
Transcript of 2014 06 09 Mazor Texas Ace Final
-
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!
-
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