Lived Truth
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Learning from Patients to Improve Communication, Safety, and Quality
The Lessons of Patient Experience Helen Haskell Mothers Against Medical Error
[email protected]
Linda Kenney Medically Induced Trauma Support Services
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Twitter #quality2016 #qfi7
If you want to serve, you need to begin with the stories. —President Bill Clinton
Frankly, there isn't anyone you couldn't learn to love once you've heard their story. —Fred Rogers, children’s television host
Listening What is your story? What are your needs? What are your desires? What are your interests?
What matters to you?
Terminology Story… …Versus Narrative …Versus Experience
Evolution of the patient voice in healthcare improvement
More terminology Patient-centered care… …versus patient engagement …versus co-production
Patients’ accounts of harm
Cross boundaries, as the patients do
Focus on relationships, as the patients do
Show the importance of professional, interpersonal and communication skills in clinical outcomes
Reveal “the rest of the story”
24 patient stories
Linking Patient Narratives to Core Competencies for Health Professions Patient Care Knowledge for Practice Practice Based Learning & Improvement Interpersonal and Communication Skills Professionalism Systems Based Practice Interprofessional Collaboration Personal and Professional Development
Core Competencies for HC Professionals 1. Patient Care: Provide patient-centered care that is compassionate, appropriate, and effective for the treatment of health problems and the promotion of health.
2. Knowledge for Practice: Demonstrate knowledge of established and evolving biomedical, clinical, epidemiological and social-behavioral sciences, as well as the application of this knowledge to patient care.
3. Practice-Based Learning and Improvement: Demonstrate the ability to investigate and evaluate one’s care of patients, to appraise and assimilate scientific evidence, and to continuously improve patient care based on constant selfevaluation and lifelong learning.
Core Competencies for HC Professionals 4. Interpersonal and Communication Skills: Demonstrate interpersonal and communication skills that result in the effective exchange of information and collaboration with patients, their families, and health professionals. 5. Professionalism: Demonstrate a commitment to carrying out professional responsibilities and an adherence to ethical principles. 6. Systems-Based Practice: Demonstrate an awareness of and responsiveness to the larger context and system of health care, as well as the ability to call effectively on other resources in the system to provide optimal healthcare.
Core Competencies for HC Professionals 7. Interprofessional Collaboration: Demonstrate the ability to engage in an interprofessional team in a manner that optimizes safe, effective patient- and population-centered care.
8. Personal and Professional Development: Demonstrate the qualities required to sustain lifelong personal and professional growth. Englander, R., Cameron, T., Ballard, A. J., Dodge, J., Bull, J., & Aschenbrener, C. A. (2013). Toward a common taxonomy of competency domains for the health professions and competencies for physicians. Academic Medicine, 88, 1088–1094. Johnson, J.K., Haskell, H., & Barach, P., eds. (2015). Case Studies in Patient Safety: Foundations for Core Competencies. Jones & Bartlett: New York.
Looking for Themes Communication problems Diagnostic issues Delays Time of day/time of week Staffing/workforce issues Behavioral issues Specific medications Specific procedures
Patient-oriented Themes Patient information about their conditions Patient information about medications Patient knowledge of the system Patient sense of security that their concerns are heeded Patient hesitations to raise concerns Patients’ sense of safety Response to adverse event
Evolving to meet a changing healthcare environment
From clinician-centered to patientcentered model of care From individual to team-based, with patient as part of the team
Maureen Bisognano Moving from
the intelligence quotient to the emotional quotient to the curiosity quotient
Patient reporting yields different results from doctor-reported outcomes Basch E JNCI 2009, NEJM 2010
Clinicians systematically downgrade symptoms compared with patients Patient adverse symptom reports correlate better with functional status than clinician reports do
…and also reveals errors and near misses not otherwise recorded. Khan A et al JAMA Pediatrics 2016
21 parents reported 23 medical errors in a children’s hospital; 10 (43%) were not documented in the medical record
Weissman J et al Annals Internal Medicine 2008
Patients from 16 Boston hospitals reported 229 adverse events; 12 of 32 (37.5%) serious, preventable in-hospital events were not documented in the medical record
Patient and family involvement improves outcomes Self-dialysis at Ryhov Hospital in Jönköping Centering pregnancy in Boston Cystic fibrosis treatment at Cincinnati Children’s Birth-injured babies in Virginia
Finishing the story
What are the lessons? What needs did you identify? What did you do?
Lewis Blackman 1985-2000
An Adverse Event
Lewis, a healthy 120-pound 15-year-old is prescribed a full five-day course of the NSAID ketorolac tromethamine following surgery. Adequate fluid levels are not maintained.
Three days after surgery, Lewis develops severe, unremitting upper abdominal pain.
Nurses and residents do not act upon increasing signs of instability, including 24 hours with no urine output and four hours with no BP. Parents’ request for an attending physician is not honored.
Four days post-op, Lewis dies. Autopsy shows a giant duodenal ulcer and 2.8 liters of blood and gastric secretions in the peritoneal cavity.
Where were the system failures in Lewis’s care process related to organization, environment, technology, work tasks, healthcare providers?
Where in the process of care did incidents (errors, near misses, adverse events, and harm) occur?
Were there opportunities in the process of care to repair physical damage? Relational damage? Emotional damage?
What are the key learning points and how do we learn from this incident to prevent similar incidents in the future?
What can you learn form this case in designing strategies and tools to better engage with patients and families?
What Kind of Error? Lack of true informed consent Medication error Diagnostic error Failure to rescue
What Went Wrong? Thinking traps
Not considering the possibility of medication reaction Not knowing medication side effects Unfamiliarity with pediatric vital signs Not recognizing the signs of sepsis and shock Reluctance to challenge incorrect orders Reluctance to change the plan Deference to hierarchy Unwillingness to intervene with someone else’s patient
Underlying Issues
Tunnel vision Bluffing Task-oriented behavior Overwork Lack of backup Group-think Intimidation
The Aftermath
Our Goals
Informed consent Resident supervision Care coordination Medication safety Timely, accurate diagnosis Rapid response and critical care training Full disclosure of medical error Learning from mistakes
The Lewis Blackman Act
We all have stories…
Linda Kenney The Silence of the Hospital
November 18, 1999
November 18 • Scheduled ankle replacement • Popliteal fossa block • Cardiac arrest • Cardiac bypass • Silence
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First Six Months • Emotional impact • Constant Questions • Follow up with Orthopedic surgeon • Calling the hospital
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What Patients and Families Want Following Adverse Medical Events • Transparent communication in real time • An Apology or an acknowledgement • Organizational response to prevent recurrence • Support (unique for each individual)
Our Mission: To Support Healing and Restore Hope
About MITSS • A non-profit organization founded in June 2002 by a patient who experienced an adverse event. • Local (headquartered in Chestnut Hill, MA), national, and international reach.
What is medically MI induced trauma? • Medically induced trauma is the emotional toll that results when something goes wrong during medical and/or surgical care. It may or may not be due to an error, but is an undesirable outcome due to some aspect of diagnosis or treatment. Most importantly, these events can significantly affect the emotional well being of the patient, family member(s), and/or clinician involved.
Why an External Resource? Clinicians may be experiencing: • Shame and feeling judged by their colleagues • Distrust of their institution • Concern over confidentiality issues • Concerns regarding licensure, job security, etc. Patients and Families: • May feel distrustful of the healthcare community • Usually, their feelings are delayed and need support long after they are discharged • They are eager to connect with others with similar experiences.
Clinician Support Toolkit for Healthcare
http://www.mitsstools.org/tool-kit-for-staff-support-for-healthcareorganizations.html
Helpful Tools for Clinicians
• Extensive bibliography -- Impact of Adverse Events on Caregivers • Common reactions to traumatic events • How to support a colleague • Self-Care www.mitsstools.org
Helpful Tools for Patients and Families
www.mitsstools.org – Downloadable Items • Patient/Family Brochure • LEND Document • Common Reactions to Trauma • Self-care Tips • Child’s Reaction to Trauma
MITSS Patient/Family Group
Ongoing Medical Issues… • 2002 - Found out my ankle shifted and couldn’t get the ankle replacement without another surgery. • 2002 – Had surgery to realign my ankle • 2007 – Right ankle replacement – 3 weeks later ended up with surgical site infection – MRSA • • • • •
3 months in bed with open wound and PICC line Skin graft surgery to close wound On PO Antibiotics on and off for 18 months Another surgery to remove infected hardware Another PICC line for 6 months
• 2011 – surgical site hernia repair(where the chest tubes where placed) • 2014 – Removal of ankle replacement (because of breakdown) to do a total ankle fusion • 2014 – 2015 constant pain and swelling in ankle • 2015 – Surgery to fix the non-union of the ankle fusion • 2015 – Emergency hernia repair • 2015 – Admitted to hospital October 2015 for osteomyelitis • 2016 – May, 2016 Right below the knee amputation (BKA)
Contact Information MITSS 830 Boylston Street, Suite 206 Chestnut Hill, MA 02467 (617) 232-0090 (888) 366.4877 (toll free) www.mitss.org www.mitsstools.org
[email protected] – Linda Kenney, Executive Director
Common Themes?
Common Themes? • Principled physician who stepped up to take responsibility • Eventual collaboration with the hospital • Role of the media • Role of the state and local medical establishment
Lessons?
Five principles of high reliability • • • • •
Preoccupation with Failure Reluctance to Simplify Sensitivity to Operations Commitment to Resilience Deference to Expertise
These are traits of many injured patients.
Co-production of safe care • • • • •
Informed decision-making A transparent system Emergency response systems Access to medical record Continuous input from the family – Family-centered rounds – Bedside change of shift
• Learning from harm
Co-direction • • • • • • •
Patient and family advisory councils Patients on committees Patients reviewing adverse events Patients on boards Interactive websites Posted performance measures Patient reporting systems
Gordon & Betty Moore Foundation
Questions • • • •
Is this desirable? If not, what is? What are the barriers? What are the facilitators?
Thank You
Helen Haskell Mothers Against Medical Error Consumers Advancing Patient Safety www.patientsafety.org
[email protected] 1 (803) 312-4390