Transcript A Mother’s Journey Through a Health Care System that was

A Mother’s Prescription for a
Health Care System that is
Meant to Comfort and Heal
Dale Ann Micalizzi
Advocate for Pediatric Patient Safety &
Transparency in Medicine
Medical Resident & Staff Training Presentation 2006
Questions/comments welcome [email protected]
Justin’s HOPE http://www.taskforce.org/justinhope.asp
The Task Force for Child Survival and Development
Justin’s HOPE
Healthcare/Openness/Professionalism/Excellence
Objectives:
• Passionately convey patient/family
perspective following adverse event
• Emphasize importance of patient safety, full
disclosure, empathy and an apology
• To demonstrate why we are in need of
system recovery, regulation and change
• Move from knowledge to action now!
Justin’s story:
Adrienne G. Randolph, MD, MSc
“On January 15th, 2001, Justin, a healthy 11year old boy, was taken into surgery to incise
and drain a swollen ankle. He was dead by
7:55 a.m. the next morning, leaving behind
two grieving and bewildered parents who
desperately wanted to know why their son
had died. But medical care was to fail them
twice – first their son died and then no one
would explain to them why. I was one of the
consultants, from another Children’s Hospital,
contacted by Justin’s parents to review his
records and figure out what went wrong.”
The Grief Process
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Shock, numbness, sadness, regret, guilt,
disbelief, terror, despair, anger, physical
pain and loneliness are common. Few
people can understand how deeply a
bereaved parent hurts unless they have
been there. The pain and sadness is always
with us.
It was our job to keep our child safe. If we
don’t know what happened, we inevitably
blame ourselves for having failed in our
duty as parents.
The Muddied Waters
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The Coroner’s office states, “ We need you to
sign for a complete autopsy because something
isn’t right…you need an attorney.”
Nurse states, “Justin wouldn’t wake up- we all
knew that meds were given that caused the
arrest.”
An attorney’s spouse confides , “There was a
secret meeting with the physicians and their
attorneys to get their stories straight because
they were afraid of criminal charges.”
Journalist states, “Residents are pulling double
shifts at area facilities to meet requirements
causing medical errors.”
Expert states, “They never gave him a chance.”
What would you do as a parent?
Will You Help Me Find the Truth?
Who is in charge?
CDC
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IHI
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HHS
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AMA
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CMS
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NIH
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ETHICS
HANYS
JCAHO
SENATORS
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WHY?
CORONOR
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CLERGY
PHYSICIANS
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BLOGGERS
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JOURNALISTS
ATTORNEYS
NYPIRG
FDA
CEO
NURSES
NPSF
Possible Etiologies:
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Pulmonary embolus
Septic shock/Severe Sepsis
Pneumonia
Medication over dose
Malignant Hyperthermia
Tourniquet
ET tube insertion
Succinylcholine
Mitral valve abnormality
Joules of electricity
Allergic reaction
Anesthesia machine malfunction, etc…
Patient/Family Contacts
Following an Adverse Event
Physicians/Nurses
Risk Mngt./CEO
Coroner
JCAHO
Health Dept.
Attorney
Records
Depositions
Experts
Settle
Gag order
Trial
Drop case*
Negligence
• The records were illegible, missing
meds/dosages, and timings are wrong.
• Anesthesia machine not impounded and checked
following event.
• No recorded vitals for hours.
• Justin’s records were mixed with adults.
• Lack of communication and team work sharing
history, labs, plan.
• No labs, urinalysis, echo, chest x-ray done pre-op
on child w/positive staph aureus. Lack of
knowledge of sepsis treatment.
• Ortho resident completed surgery and irrigation
alone without knowledge to parents.
• “Justin's case was a constellation of errors and
hurried approach that left everyone with a share
of the blame. There is no such thing as a minor
procedure".
My Expectations
I know the chaos, the nursing shortages,
overtime, the financial obligations, the
insurance company guidelines and the
arrogance that interferes with the quality
of care. I have worked in healthcare and
education for over 20 years. I also know,
when it came time for my son’s surgery,
you remove the chaos. You develop a
team effort to review all information and
establish a plan. You openly communicate
between specialists, remove arrogance
and intimidation and have a common goal
to heal.
My Expectations
It is your obligation to complete
checklists, check and double check
medications and dosages, assign a
nursing team and treat every case as a
possible emergency with the patient as
your ONLY focus. Look at the child, listen
to the parents and use common sense and
professional judgment when making all
decisions. Slow down! You are holding my
child’s life in your hands. Justin WAS
important and should have been important
to his healthcare providers also.
I trusted you.
My Disappointments
The hospital failed us, the nurses who were his
advocates failed us, and the resident who
failed to draw pre-op labs failed us. Most
importantly, the surgeon who gave the case to
the resident and was NOT even in the OR at the
time of surgery failed us. The health department
failed us by accepting the medical personnel's
information as truthful. The hospital CEO failed
us by not providing us with any information or
support. Error upon accepted error killed my
son and my faith in a medical system that was
meant to comfort and heal. We will not let
this happen to another family as the pain
is unbearable!
Obstacles
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System failures
Fear of legal action
Peer review/pressure
Physician culture of protecting their own
Ordered to deny and defend
Accepted practices
Weak medical regulation and standards of care
Holiday weekend/add on case/surgeon
behind/disparities
Secrecy/Intimidation/Arrogance/Narcissism
Drug/Insurance/Med-Mal company protocols
Politics/Attorneys/tort reform
CEOs resisting change and not taking
responsibility
Drug/alcohol abuse
Nursing shortages-minimal staffing
A Physician’s Perspective
“ All day, each and every day, we are making
decisions affecting people’s lives. We do not and
cannot stop to cross every T and dot every I. If
you live in that mind set, day after day, it is hard
not to become casual about the people we deal
with. Sometimes the outer shell is necessary to
continue to do what we do, to see what we see,
and still keep doing it. Caring parents are then
regarded with suspicion, labeled as overprotective. A culture of us Vs them develops.
Then when disaster we cannot fix tears us out of
our complacent, protective shell, we have no
effective coping mechanisms. At that moment we
doctors are at our most vulnerable, easily
persuaded by hospital spin doctors and risk
adjusters…told to say nothing. Perhaps it is the
hospital administrators you need to convince that
the “truth will out” in the end.”
~by an Anesthesiologist abroad.
What NOT to say to a Parent
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“YOU signed the consents for surgery and
anesthesia.”
“Are you receiving counseling?” You need to get
over it.
“These things happen and you may never know
what went wrong.”
“I knew there was a problem when I heard the
alarms.”
“I have no idea what happened-go ask a
specialist.”
“I guess I can squeeze you in for a meeting but
I’m very busy.”
“I don’t have to share the M&M and QA
investigations with you.”
“I didn’t tell the resident to begin surgery alone.”
“Medicine is an imperfect science- I did nothing
wrong.”
Compassion
"We are truly social animals who need to
know that someone cares. That is not a
weakness; but, a basic need like eating
and breathing.”
~ by Colonel John H. Chiles, M.D.
What Parents want and NEED
following an adverse event
 Immediate unbiased investigation with
complete disclosure
 To be listened to and taken seriously
 Practices/systems changed to prevent a
similar event
 Standards of care mandated for pediatric
patients with regulatory systems in place
and someone in charge
 Respect/Empathy/Apology
 Medical bills dismissed*
 Justice*
Provider/Patient Relationship
The family needs to sit down with all of
those involved and discuss the adverse
event with honesty and civility. This is
OUR CHILD and it is your obligation to
release every detail. Don’t protect us.
Don’t lie to us. Don’t diminish our need to
know. You owe us this much. Disclosure is
part of healing those who are left behind.
It is your responsibility to make sure that
disclosure happens for your patient and
yourself.
Ethics in Medicine
"I'd doubt that an ethics course would have made
a difference in the docs attitude toward you. That
kind of attitudinal change must occur on a much
deeper level than cogitating about the right and
the good (which is what ethics courses usually
emphasize). Rather, one has to feel utterly
disgusted over deceiving or stonewalling. I'm
convinced of that. You have to be so revolted by
dishonesty that you simply won't do it. And
because physicians become inured to cutting the
corners on honesty all the time, they often do
poorly on disclosing mistakes, etc."
~by John Banja PH.D. Author of Medical Errors
and Medical Narcissism and Bioethics Professor
Emory University
A Mother’s Plea…
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No one involved in Justin’s care has ever been
accountable, apologized or learned from our loss….
and that is heart breaking to me. We still don’t know
what happened to our son and that is difficult to live
with.
I want to change the system so that this does not
happen to others. I have become revolted.
Please help me make this better for the children…
who are the future.
Lessons Learned
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I learned that to improve the system, the patient and
family must become an active member of the health care
team and not feel intimidated or embarrassed. Trusting
their senses and their instinct, they should speak up to
save the lives of those they care most about.
I learned that doctors are not perfect and they need to be
held accountable. Doctors are no different than the rest
of us-they cry and they have addictions, divorces and
skunks in their backyards. They are human.
I learned that the current legal system is archaic in
dealing with the death of a child.
I learned that people sue out of anger not financial gain.
I learned how to beg and be persistent.
I learned an immense amount about medicine, law and
humanity.
I learned what a broken heart feels like and how much
sadder it is to be left alone with uncertainty.
Courage to Change
Some of the most despicable human
behavior has been conducted in the
name of “I’m only following the law”
or “I’m just doing my job.”
My Agenda is Bold but Essential
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Develop, train and implement real time electronic
format (IT) of all medical records, digital recordings of
all OR procedures and transparency in medicine. The
records should have been our eyes.
Re write your disclosure policies as if you and your
family were the patients.
Unannounced walk through safety inspections.
Sepsis education, research and standards of care.
Create non-punitive environment for mandatory
reporting of errors via Hot Line with trauma support
for patients and providers.
Demolish the “walls of silence.” Find your voice.
Do not fall victim to arrogance or accept it from otherswe are in this boat together.
Equal care and coverage for all- NO disparities.
Puzzle of Hope-We need you!
leadership
technology
communication
teamwork
Empathy
patient
centered
care
honesty
education
Medical School
"Despite the difficulty in changing actual
behavior, there may be symbolic importance
and moral worth for medical schools to
demonstrate their normative commitments,
encourage apologies as the virtuous thing to do,
and to put increasing moral pressure against
the silence that surrounds mistakes."
~by Marlynn Wei (MD/JD Yale candidate)
Changing a Culture
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Gathered a group of patients/family members who
had experienced an adverse medical event (either at that facility
or another).
Hired an outside consultant to lead focus group
Interviewed group: asked them about specific good and bad
experiences with staff/systems, etc. (all concerns)
Data collected/reported/shared with group
Assigned group of key staff in the Patient Safety/Quality Dept to
write a new policy on Full Disclosure
The staff group met with the family/patient group to discuss
policy elements (used the focus group report)
Draft policy written; reviewed & edited by family/patient group
Attorneys, CEO, insurance company consulted and approved
Disclosure policy re written
A core group of physicians trained on disclosure using family
members in role play situations
Rx….. HOPE
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Dedicate yourself to patient/family centered quality
care
Work as a team and focus on communication and
safety
Don’t be afraid or intimidated to ask questions-be
human and courageous
Report/Research/Teach-share knowledge and learn
from mistakes
Respect/Empathy/Apology/Listen. Be real following
adverse event
Be responsible for your provider/patient relationship
Become revolted and insist on change
Thank you!
Special thanks to all of the physicians from across the US
and abroad who cared enough to help a grieving
stranger understand. I had to search for them but I
found them in abundance. They were my teachers, my
confidants, my friends. They listened to my heart and
shared theirs. They are the reason why I know
compassion, integrity and safety really do exist in
medicine and we can do better. I will be forever
grateful. They know who they are~
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Music by Karen Taylor-Good “Precious Child.”
Ark drawing by Erika G. age 7
Gratitude to Mark L. Rosenberg, MD, MPP
(All rights reserved 2006)
Studies
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Patients’ and Physicians’ Attitudes Regarding
the Disclosure of Medical Errors, 289 JAMA
1001, 1006 (2003). Gallagher et al.
Effect of Reducing Intern's Work Hours on
Serious Medical Errors in Intensive Care Units,
New England Journal of Medicine, Oct. 28,
2OO4, Landrigan.
Risk management: extreme honesty may be the
best policy. Ann. Int. Med. 1999;131(12):963-7,
Kraman & Hamm.
When Things Go Wrong: Responding to
Adverse Events, Leape et al, 2006.
Disclosure of Medical Errors Desirable but
Difficult, Researchers Find, University of Iowa,
Kaldjian, 2006.
Affiliations and Resources:
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Justin’s HOPE founder
http://www.taskforce.org/justinhope.asp
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Institute For Healthcare Improvement-Patient, Family,
Consumer Community http://www.ihi.org
Sorry Works! Coalition board member
http://www.sorryworks.net
AHRQ Patient Safety Network http://psnet.ahrq.gov/
Medically Induced Trauma Support Services
http://www.mitss.org
Patient Safety Group http://www.patientsafetygroup.org
The Institute for Family-Centered Care-expert panel
http://www.familycenteredcare.org
Compassionate Friend's support group co-leader
http://www.compassionatefriends.org
Parent to Parent of NYS-advisor
http://www.parenttoparentnys.org
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A NEW ERA
It is most certainly a time in history
for an era of compassion, integrity
and safety. Let’s begin with medicine
and blaze the trail. The others will
follow when they see our success.
No More Needless Deaths
Please remember me….
ERIN
CLAIRE
JUSTIN
STEFANIE
Tyler
MONICA
LEWI
S
JESSIC
A
JOSIE
MICHAEL
JENNIFE
R
KATIE
CHARLOTT
E
SEAN
SETH
SPEKEN
LIBBY
ZION
LISA
Amee
Justin A. Micalizzi
5/31/89-1/16/01
He did matter and he deserved better!