The Patient in Patient Safety · be patient safety champions. Anyone who does not put the patient...

Patient Safety -- One

Family’s Story

Oregon Patient Safety Commission

Third Annual Patient Safety Breakfast Salem, Oregon

Presented by

Dan Ford February 28, 2014

FORD FAMILY EXPERIENCE

Ford Family Experience


May 1, 1991, Diane Ford, age 47, entered a Chicago area hospital for “routine” hysterectomy.

Vibrant woman, loving wife, mother of three children (ages 11, 14 , 17).

Raised in western Tennessee; Flight Attendant for Pan Am World Airways in San Francisco, when we met.

Diane has Master’s degree in Education. Was active in church leadership, education, and music; was part-time student – Master’s Program in Theology at McCormick Theological Seminary in Chicago – when respiratory arrest happened.


During hysterectomy, colon was cut requiring colostomy (i.e., two consecutive surgeries).

Twelve hours later in her room, Diane overdosed on morphine administered through PCA pump. Narcan (overdose reversal agent) not available.

Code team responded immediately but took over 21 minutes to intubate her.

Too long without oxygen, experienced a respiratory arrest, led to permanent brain damage/permanent short-term memory loss.


Following the respiratory arrest, three more hospitalizations/two more surgeries over the next six months, the result of complications with her original procedure.

Diane’s quality of life plummeted – her life and family’s lives turned upside down.

The way the hospital managed these and the following interactions changed all of our lives forever.


Primary Risk Manager contact headed IPT (Illinois Provider

Trust), affiliated with Illinois Hospital Association (IHA);

hospital was one of 29 IHA members in this insurance

company.

I asked lots of logical questions – received polite

responses at first, then defenses went up.

Requested Diane’s medical record, got copy, for $94.

Requested the committee report that debriefed her

hospitalizations and medical errors: “Oh no, that is

confidential.”

It was clear I was not invited or wanted in that space.

This is what it felt like…


Risk Manager Attitude:

“We know best. Sorry your wife has brain damage. That

happens.”

Mixture of gruffness, arrogance, insensitivity,

antagonism, confrontation, lack of empathy, dismissive,

obfuscation, condescension.

Stated his role was to save hospital money, the hospital

was not philanthropic and would not give away money.

His wife was his key associate…bad cop/good cop.

Dan initiated all meetings; always felt like being pushed into

black hole; hospital wishing we would just go away.


After 21 months of frustrating dialogue with the Risk

Manager, hospital administration and physicians, final

meeting was held with IPT, absent the Risk Manager.

A financial settlement of $100,000 was offered/turned down.

Diane was permanently mentally disabled and scarred, will

never work again, and is living a poor quality of life. Her

interest was to become a hospital Chaplain.

We were treated in a cruel manner by this risk manager. He

had no empathy or the fact that as Don Berwick suggests,

patients and families are not the visitors. Caregivers are the

visitors, the guests, privileged to be helping patients.


Medical malpractice lawsuit filed. Two months later, settlement offer was doubled and again turned down.

Defense attorneys successfully delayed lawsuit for nine years.

Diane lost interest, quit the lawsuit; we settled for a very nominal amount.

Diane just wanted a brain that worked – could no longer handle continued revisiting of what happened to her brain, her life, her family, her future. She didn’t remember details anyway.


If defense attorneys delay and delay successfully, the

patient/family wears down, just goes away, or dies.

They were right; those attorneys won.

It was not right; nor did not fit the spirit of medicine.

The Ford Family Experience

22 Years Later…

Diane’s Situation

Our Children

My Passion for Safety

Diane’s Situation

Initially lived at home. I saw to of all of her needs.

We were divorced after six years. Neither of us ever

expected or wanted this to happen. Brain damage

does terrible things to a person, to a marriage, to a

family.

Her brother in Franklin, Tennessee (Nashville

suburb) became her informal Conservator, where she

lived in an independent living facility.

Diane’s Situation

Diane then lived in Grand Rapids, Michigan, in an

independent living facility for several years, our

oldest son her legal Conservator.

Now lives in the same independent living facility

back in Franklin, Tennessee -- our two younger

children her legal Conservators.

Quality of her life is not good.

Our Children

One of my prayers in 1991 was that none of our three children awaken in 10 years with serious psychological problems.

A challenge – each doing okay – no one is comfortable with our divorce though seem to understand. We are close.

Support my efforts to cause positive change and are giving ideas. They love their mother. They work hard to communicate and to be with her.

I asked Chris, Jonathan, and Sarah for their thoughts for my first presentation in 2003, 12 years after her respiratory arrest.

Our Children – Christopher Chris – 17 at the time and now 40 – said, “Dad, I

think aside from the fact of the horrible effects of it all, with today’s culture you should stress how it makes them look. How downright unprofessional as well as cold and non-healthcare they really look like. If these organizations would continue to focus on why they were built, that foundation will help them know what right must be done.”

Chris has an MBA, works for Michigan Health Connect (MHC) in Grand Rapids. MHC is the HIE (Health Information Exchange) for western Michigan. He has two adorable children, 9 and 6.

Our Children – Jonathan

Jonathan – 14 at the time and now 38 – said, “On May 1, 1991, my life changed forever. I remember mowing the lawn at my house for our family and thinking that life is going to be different now. I remember walking into the hospital for a visit after the respiratory arrest, and my dad was standing there. My mom had a stack of cards from friends sitting on her bed. My dad told me to watch and had my Mom read the cards to me. She would pick up one card, and then another, and then she would pick up the same card again, not knowing that she had just read that card. My dad said that to show how she was going to be different now.”


And further, “Today, memory loss is only the tip of

the iceberg. She is very irrational and has been

diagnosed with dementia. I have not had a mom

since that day in 1991. My Mom didn’t call me

when I was going to college. She didn’t send me

cookies. How could she? She didn’t know what

state I was in.”


Jonathan attained his Master’s, taught grade school in inner city schools in Tucson, Ariz., and Nashville, Tenn., now works for a company in Birmingham, Alabama that is an online ticket broker.

Jonathan and Holly have the cutest 16 month old girl in Birmingham, Alabama.

He does triathlons, including ironman’s, half ironman’s and olympic level triathlons. My role model for fitness. The ironman event is on my bucket list.

Our Children – Sarah

And, from Sarah – 11 at the time and now 34. Sarah

stood by her mother’s bedside for many, many

hours, while Diane was in her coma, with all those

tubes running in and out of her body, just talking to

her. She saw a horrifying transformation in her

mother when Diane awakened, though she looked

the same on the outside.


“The most important thing now is to have the

doctors sit down with me and tell me they are sorry.

Money doesn’t mean as much as compared with my

personal feelings. There is nothing I would desire

more than for them to take responsibility and to tell

me what happened. Someone out there does not

even have the respect for her and her situation to tell

her how sorry they are.”

This never happened, with any of us.


Sarah lives in Franklin, Tenn. Has Bachelor’s

degree, is married, worked for a public/private

community housing partnership in Franklin, for

achieving quality affordable housing for elderly, low

income, disabled, and workforce families. She is

now a full time mother.

Sarah and Jeremy have two wonderful, adorable,

cute children, a 21 month old girl and a three month

old boy…

DAN’S BACKGROUND AND

PASSION FOR PATIENT

SAFETY

Background and Passion for Safety Co-founder of Witt/Kieffer, Ford, Hadelman & Lloyd in 1992

– not the right platform or culture for causing patient safety change and/or for continuing my search practice – left in 2002.

Own search firm for two years in Tucson, Arizona.

Joined Furst Group, Rockford, Illinois, in 2005, stayed in Arizona – wonderful team of search consultants – values in sync, right/supportive culture for my national role in patient safety. Moved to Michigan 2012, retired in October 2013.

Knew I would play a role in causing change – Diane’s multiple errors and the attitude toward me when I asked questions was terribly wrong.

My Passion for Patient Safety

Could not do anything until malpractice lawsuit was over – watched 1999 go by, with “To Err Is Human” IOM report.

Became patient safety advocate in 2002, after the lawsuit.

ASHRM invited me to serve on special task force on patient safety in 2002/03, and co-present at its annual meeting in Nashville in 2003.


My philosophy -- “Don’t get even, get even better” -

- Title of an Article by Karen Salmansohn, who also

wrote THE BOUNCE BACK book.

My Mission is planting seeds of constructive

change…presentations, board and committee

membership, networking, writing and conferences.

My bias in search was to recruit board members and

executives who share, live and role model this

passion, along with the requested position specs.


My goal is that 100 % of you here and in health care

be patient safety champions.

Anyone who does not put the patient and the

patient’s well-being first should not be in health

care.

Dan, are you a search consultant or a patient safety advocate?

Baffled me. Something wrong with doing both?

Tells me more about the asker of the question than about me.


Member of a number of national/Arizona patient

safety and quality committees and boards since

2003: The Joint Commission, IHI, NQF, Institute

for Safe Medication Practices (ISMP, Philly), TMIT,

AzHHA, Carondelet Health Network (Tucson),

Catholic Health Partners (Cincinnati), Advisory

Board of GE HealthCare PSO (NYC), MHA

Keystone Patient Safety Institute, Oregon Patient

Safety Commission.

WHO Patient Safety Champion.


“All the adversity I've had in my life, all my troubles

and obstacles, have strengthened me... You may not

realize it when it happens, but a kick in the teeth may

be the best thing in the world for you”…Walt

Disney.

It got my attention – the medical errors, arrogant

attitude, lack of respect, lack of transparency and

lack of responsiveness, and 9 year lawsuit spawned

my patient safety advocacy.

PATIENT EXPECTATIONS

Patient Expectations 100% of Time

To be listened to, taken seriously, and

respected as a care partner.

To have my family/caregivers treated the

same.

To participate in decision-making at the level

I choose.

-Jim Conway, IHI presentation


To be always told the truth.

To have things explained to me fully and

clearly.

To receive an explanation and apology if

things go wrong.



To have information communicated to all my

care team.

To have my care timely and impeccably

documented.

To have these records made available to me if

requested.



To have coordination among all members of

the healthcare team across settings.

To be supported emotionally as well as

physically.

To receive high quality, safe care.

-Reflections of Patient and Family Voices: Jim Conway

Presented, IHI Forum, December 2005

What Also Matters to Patients?

That providers view patients/family as partners and with respect, not as uninformed interlopers.

To be responsible providers of information regarding health changes, medications, and allergies.

To be fixed correctly, relieved from pain, returned to good health, healthy babies delivered, long term needs addressed.

Patient and family-centered culture – commitment that starts at the top with board and CEO, as well as front line staff.

What Also Matters to Patients?

Patient safety champions in all their provider contacts – everyone! Patients assume/expect this.

Culture that invites and supports bedside patient advocates 24/7 – encourages speaking up and asking questions.

Hospital/providers take responsibility when unanticipated outcomes/errors happen, open disclosure, apologies, transparency, integrity, honesty, intent for constructive change.

To be invited…speakers, committees, boards, and analyses when things go wrong (e.g., RCA).

The Beginning of Healing

“If done well, patient inclusion in the system analysis process will not only encourage more accurate investigative findings but can also help involved healthcare providers and patients and their families to begin the healing process in a positive and effective manner.”

- Teri Zimmerman and Geri Amori, ASHRM journal article, 2008

ROLES OF PATIENTS AND

FAMILIES

Roles of Patients and Families

Responsible providers of information – medications,

allergies, health changes, literacy issues.

Ask questions and speak up, 24/7 patient safety

advocate/navigator for loved ones.

Partner with providers and become involved –

boards, committees, storytelling, testimonials – when

asked or volunteer.

Not only Patient Advisory Councils, but members of

PS/Q and other committees.


Encourage openness/transparency with/by all

providers.

Expectant and presumptuous – when things go

wrong, expect honesty, transparency, apologies. If

don’t get it, ask for it.

Invited to participate in RCA’s – hot potato,

reticence understood. Dan’s Dec 2013 article.

Suggest ideas to providers, e.g, portals for patients

adding input into medical record…though not

changing what is there. It’s being worked on…


Strive for general spirit of partnership with

providers.

Encourage, support, and be a resource to other

patients and families – WHEN THINGS GO

WRONG, IT IS REALLY LONELY

Cause legislation/policy changes when appropriate

and necessary.


Stay away from lawsuits, unless the wall is just too

big.

Activate Rapid Improvement and Response events.

Patients can be source of best practice information --

engaged in developing improvement practices. Patient is

the common thread to the entire patient experience.

Patients/families can be best marketing arm for a

hospital, without being invited or on the payroll.

Can also be the biggest detractor, when things go wrong.

How can Leaders Make a Difference?

Ultimately, we must recognize that the patient is at the heart

of all that we do.

“The one constant in all the interactions a patient will have, in

all the different care settings that a patient will encounter,

is the patient.”

-Ryan Sidorchuk, whose daughter, Paige, died after her

healthcare provider misdiagnosed her cancer and gave her the

wrong treatment. Ryan now works for that hospital district in

Canada as a patient safety advocate.

Role of Providers…Don Berwick

“Pardon this unwelcome interruption in your life.

Thank you for inviting me to help. Thank you for

letting me visit. I am your guest and I know it.

What may I do for you?”

From Don Berwick, in his remarkable speech at the

2010 Yale Medical School Graduation. His

daughter was in that class.

A lesson learned about the patient interaction from

his first Tutor.


To be adopted…board member, provider or executive

pick a bed, and whenever in the hospital, can make a

point of visiting the person in the bed, introduce

him/herself, ask how they are doing…may not always

be someone there, but if the pattern gets set, nursing

may call and say: “There is someone in your bed today,

if you want to visit.”

John F. Kennedy…

WHAT DID DAN WANT

INSTEAD OF WHAT

HAPPENED, AND INSTEAD OF

THE WAY HE WAS TREATED?

Dan’s Retrospective Wish List

Human kindness and respect, without deliberate

confrontations/arguments.

To be asked what we wanted. Listened to.

Honesty and Transparency – no wall – talk to us –

don’t hide, or try to intimidate us.

Opportunities for genuine two way dialogue with

key providers/clinicians, including participation in

the RCA and a written report on what happened.

Physicians and hospital take responsibility.

Clear, obvious accountability and apology.


Settlement discussion without a lawsuit.

No lawsuit. Never wanted to do that.

A decent settlement.

Invitation to serve on their hospital board

quality and patient safety committee.

Opportunity for joint discussions with related

medical supply vendors (eg, PCA pump).

Solicitation of my ideas for change.


For Diane not to be told that her hysterectomy

was routine…no surgery is routine.

Response to my inquiries when I tried to

contact the two consecutive hospital CEO’s

after our lawsuit was over…never the

courtesy of a response…I could do nothing to

“hurt” them…this was after Diane’s

respiratory arrest, brain damage and our

lawsuit. I suspect legal said to ignore me.


Great question to end this presentation.

Thank you for asking, Bethany. I wish

someone had asked me this 22 years ago…not

the day after Diane’s respiratory arrest, but

over the next several months.

I forgave, but wanted honest and informative

answers…and genuine, expressed empathy.

Again, from Don Berwick’s Yale talk…

“But now I will tell you a secret – a mystery.

Those who suffer need you to be something

more than a doctor; they need you to be a healer.

And, to become a healer, you must do something

even more difficult than putting your white coat

on. You must take your white coat off. You

must recover, embrace, and treasure the memory

of your shared, frail humanity – of the dignity in

each and every soul…

From Don Berwick (cont)

…When you take off that white coat in the

sacred presence of those for whom you will care

– in the sacred presence of people just like you –

when you take off that white coat, and, tower not

over them, but join those you serve, you become

a healer in a world of fear and fragmentation, an

“aching” world, as your Chaplain put it this

morning, that has never needed healing more.”

(Yale 2010)

It’s doable…

“I don’t do great things. I do small

things with great passion” – Mother

Teresa paraphrased

Transparency and the Truth

And ye shall know the truth, and the truth

shall make you free – John 8:32

Whether one is a Christian or not, this applies

in every aspect of our life. We just need to

choose to believe it.

Transparency leads to the truth.

This is what patients and families want and

deserve. We want to be treated as respected

human beings, in a caring and transparent and

trusting partnership with providers.

I would appreciate your ideas as your journey

and my journey continue. Thank you!

Why I do what I do…

Contact Information

Dan Ford, MBA, LFACHE

E-mail: [email protected]

Mobile: 520.548.3339

Rockford, Michigan (Grand Rapids)

Patient Safety Advocate

Grandkid Lover

Fitness/Health Advocate

Recently Retired Health Care Executive Search

Consultant with National Practice

mailto:[email protected]

The Patient in Patient Safety · be patient safety champions. Anyone who does not put the patient...

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