“The Role of the Patient in Safety”

Six Recommendations

Dan FordThe Seventh Annual Quality Colloquium – Harvard University August 19, 2008

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OVERVIEW

The Ford family medical error story puts a face on unexpected outcomes

Highlights of ideas and recommendations, from the Ford family and others’ experiences

We are all consumers as patients and family members – encourage thinking as consumers

We should all be active patient safety advocates, as providers of services and products, as well as consumers

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RECOMMENDATIONS

1) Let’s be responsible providers of information 2) Let’s ask questions and speak up 3) Let’s be expectant and presumptuous 4) Let’s be encouraging and supportive 5) Let’s participate with providers and become

involved 6) Let’s encourage an openness to other new

ideas

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LET’S BE RESPONSIBLE PROVIDERS OF INFORMATION

As patients, let’s know, document and update our medical history, active medications and our allergies.

Understand that medication improper usage, over-use, misuse and hand-off’s are huge source of medication errors worldwide.

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LET’S BE RESPONSIBLE PROVIDERS OF INFORMATION

Active participation implies sharing information and opinions, joint problem solving and joint responsibility. (Patrice Spath)

Bring literacy issues to attention of providers. In the U.S., over 90 million have literacy challenges.

Patients provide a second set of eyes. (Merrilyn Walton, Australia)

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LET’S ASK QUESTIONS AND SPEAK UP

“Speak Up” program. Joint Commission suggests that patients self-educate about diagnosis, medical tests, treatment plans.

Find out who we can talk with regarding anxieties, concerns about our care. Tell someone to stop if it doesn’t feel right.

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LET’S ASK QUESTIONS AND SPEAK UP

Don’t be intimidated. “Doctor, did you wash your hands?” Ask about anesthesia, IV drips, special tests,

x-rays with dyes, etc. Insist on full disclosure. We have a right to

know exactly what happens to our body. “Nothing about me without me.”

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LET’S ASK QUESTIONS AND SPEAK UP

When visiting a doctor or hospital, invite a family member, friend, patient advocate, navigator or vigilant partner to help. Help those who have no such advocate.

Ask for medication sheets, help caregivers cross-check medications, receive tips about safe medication practices.

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LET’S ASK QUESTIONS AND SPEAK UP

Find out how infections occur, early symptoms and avoiding, treatment and prevention plans.

We can monitor for compliance with safe practices, including medication administration, AFTER our patient identification is verified.

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LET’S ASK QUESTIONS AND SPEAK UP

Don’t be afraid to beg and be persistent. (Dale Micalizzi, New York)

We can be too easily intimidated by providers from actively participating in our own care -- encourage and work on our right to question and to challenge.

Again….speak up!

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LET’S BE EXPECTANT AND PRESUMPTUOUS

The patient is the center of the health care team.

We are all consumers, as patients or family members, at some point.

Picker Institute Europe suggests that patients desire respect ….

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LET’S BE EXPECTANT AND PRESUMPTUOUS

.…Respect for our values, preferences and expressed needs, information and education, access to care, emotional support, involvement of family and friends, continuity and for transition, physical comfort and coordination.

We should expect these to be honored, at all times.

“Patients can become the first line of defense, against misadventures and unsafe situations.” (Merrilyn Walton, Australia)

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LET’S BE EXPECTANT AND PRESUMPTUOUS

Expect our privacy and confidentiality be honored at all times

Expect current, evidenced-based medicine, unless logical and convincing reasons for other approaches

If a mistake happens without our knowledge, even without harm, we should be told -- ethical thing to do.

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LET’S BE EXPECTANT AND PRESUMPTUOUS

OUTRAGED by too many continuing medical errors – let’s work with providers to eliminate them.

Expect candor, honesty, disclosure and transparency to be the norm.

No longer accept being treated as numbers, statistics, nameless.

We are people with families, victims, survivors and change agents

Let’s expect listening to be the norm – when missing, is at the heart of many problems.

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LET’S BE EXPECTANT AND PRESUMPTUOUS

Accountability by providers to patients may help to balance the unequal distribution of power between a physician and injured patient. (Nancy Berlinger) Accountability is the lynchpin in the relationship.

Expect and encourage providers to do the right thing, when things go wrong - including taking responsibility for their own actions.

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LET’S BE EXPECTANT AND PRESUMPTUOUS

Hurting patients are not interested in hearing about hospitals protecting assets. Lack of respect.

We have a need to be heard. There is a need for closure – including an honest and candid understanding of what happened, apologies, what is being done for prevention in the future.

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LET’S BE ENCOURAGING AND SUPPORTIVE

Let’s encourage providers to become patient centric, rather than physician centric.

Providers can better plan and deliver care, and we can achieve better outcomes by truly partnering with patients and families by involving us in decisions about our own care by gaining the benefit of our help and insights By having in-depth conversations with patients, from

the beginning of the relationship and in the hospital Hospitals can also improve staff satisfaction.

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LET’S BE ENCOURAGING AND SUPPORTIVE

Patient and Family Advisory Councils are being formed -- I chaired the “Patient Role in Safety” Sub-Committee of AzHHA Patient Safety Steering Committee.

Encourage providers to tell the truth, when unexpected outcomes happen, and to apologize. Culture has to start at the top of every hospital. Needs to be the right spirit and “a fire in our belly” for telling the

truth. Even when telling the truth and being candid takes us out of our

comfort zone.

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LET’S BE ENCOURAGING AND SUPPORTIVE

The bedside nurse can still be the patient’s best advocate. Patient loads, stress and human frailties get

in the way, Let’s remember and enhance the nurse

advocacy and partnering role. Let’s assure this is taught in training – patient

centered language and behavior

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LET’S BE ENCOURAGING AND SUPPORTIVE

Lucian Leape from Harvard suggests: “Let’s help the clinician do the right thing, rather than chastising them for not.”

Encourage providers to understand the “Deer in the Headlights Syndrome” when unexpected outcomes happen. Patients and families are suffering terribly

following these events, We are in shock – devastated in many ways.

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LET’S BE ENCOURAGING AND SUPPORTIVE

Providers also go through “Deer in the Headlights” syndrome, when experiencing unexpected outcomes. Physicians and nurses and others did not

wake up this morning, with the intent or anticipation of hurting someone today.

They are also often in shock or grief. Need support for all.

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LET’S BE ENCOURAGING AND SUPPORTIVE

Let’s encourage providers to never forget the HUMAN side. Role model that as patients and family members. Every patient experience requires COMPASSION

and empathy. Significant efforts are being made to deal with

the clinical and system pieces. But….we find the human part to be awkward.

Let’s encourage, support providers to be team players – that all be good wingmen

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LET’S BE ENCOURAGING AND SUPPORTIVE

ARROGANCE, parental attitudes, turf battles by some clinicians continue – stymies progress and change in delivering care

All are human beings, w/human needs – patients, family members and staff – respect everyone’s dignity and roles.

Cold and unfeeling attitudes build barriers. Genuine listening will help break them down.

It’s about mutual respect – communications and teamwork – need to rebuild trust.

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LET’S BE ENCOURAGING AND SUPPORTIVE

Empathize with providers that involving patients and families is not easy. This is a journey in a new direction.

Understand that engagement is key, as well as a new learning experience.

Humbled, supportive and complimentary of all of the good progress being made, even as providers weary from all now on their plates.

Respect and encourage champions who work tirelessly for change – many are here today

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LET’S PARTICIPATE WITH PROVIDERS AND BECOME INVOLVED

Let’s volunteer to participate on provider patient safety, quality and patient-centered care boards and committees, as well as self help groups – such as MITSS here in Boston (Linda Kenney)

Dana Farber Cancer Institute in Boston involves patients and family members on virtually every committee and board in the hospital.

Our voices, as patients and consumers, can be heard in many venues.

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LET’S PARTICIPATE WITH PROVIDERS AND BECOME INVOLVED

In my committee work, I remind providers that I am not a clinician. Typical response: “We have enough clinical experts around the table. We want to hear your voice and ideas, as a consumer. Question us, ask us, encourage us.”

Many people like me – would love to be positive and constructive committee and advisory board members – eager to serve, learn and be good ambassadors.

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LET’S PARTICIPATE WITH PROVIDERS AND BECOME INVOLVED

Patients and family members worldwide are becoming involved in consumer and patient advocate organizations.

Desire is to PARTNER – to work cooperatively/constructively with providers regarding patient and family-centered care, as well as patient safety and the aftermath of medical errors.

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LET’S PARTICIPATE WITH PROVIDERS AND BECOME INVOLVED

May, 2006, “Patients for Patient Safety” Workshop in San Francisco, sponsored by WHO/PAHO.

54 participants from South America, Mexico, Canada and United States – profound experience – followed the inaugural WHO workshop in London in December, 2005, with 24 participants.

Similar Workshop in Chicago in June, 2008 – consumers and providers – Chicago area focus.

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LET’S PARTICIPATE WITH PROVIDERS AND BECOME INVOLVED

STORYTELLING by patients and families – presentations, personal contact, in writing.

Important to help leadership spawn change. Injured patients and those who have lost loved

ones to medical errors can share their stories Providers need to hear – are inviting these

stories – catalyst for causing change. Providers may weary of the stories. WE HOPE

NOT!

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LET’S PARTICIPATE WITH PROVIDERS AND BECOME INVOLVED

Let’s help the healing process, for all – patients, families and providers.

Rounding – some organizations are now inviting patients and families to take part in multi-disciplinary rounds and asking for their comments.

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LET’S ENCOURAGE AN OPENNESS TO OTHER NEW IDEAS

Medical records – assure that patients and families have access to the entire medical record – spirit of information availability and transparency.

Incorporate and invite input from patients and families directly into medical and health records. Not to change what is written by providers, but…. To supplement. We should be able to provide our

own notes in the record.

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LET’S ENCOURAGE AN OPENNESS TO OTHER NEW IDEAS

Partnership in the healing process is absolutely essential.

Dr. Saul Weingart and colleagues at Dana Farber and Harvard University – as well as others nationally, are conducting substantive studies on patient and family involvement.

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LET’S ENCOURAGE AN OPENNESS TO OTHER NEW IDEAS

Sarah Lawrence College in New York offers a master’s degree in patient advocacy.

RCA’s – involve patients/family when debriefing unexpected outcomes and problem solving.

Invite patients and families to participate in RCA’s, and other clinical investigations – not all will want to participate, nor should be.

Do away with classical CYA attitudes. Offensive to be left out of discussions about

what really happened – it is our body.

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LET’S ENCOURAGE AN OPENNESS TO OTHER NEW IDEAS

RETICENCE – legal considerations, tradition, change, peer review, role behaviors, ego’s and other human behaviors.

Telling the TRUTH is the right thing to do. Openness will enhance learning all around – will decrease, rather than increase, litigation.

Continued tension between the fear of litigation and transparency/telling the truth.

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LET’S ENCOURAGE AN OPENNESS TO OTHER NEW IDEAS

Instead of a divisive spirit, with on-going care and when unexpected outcomes happen, let’s be PEACEMAKERS. “But the wisdom that comes from heaven is first of all

pure; then peace-loving, considerate, submissive, full of mercy and good fruit, impartial and sincere. Peacemakers who sow in peace raise a harvest of righteousness.” James 3:17-18

We are each human beings – need each other. Know the Bible is not the source of everyone’s

faith, but the spirit of this is universal.

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This is why I do what I do…

Grandpop and Jadyn – April 2008

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Dan Ford Biography

Spouse suffered permanent brain damage/short-term memory loss because of medical errors in an Illinois hospital – a patient and patient safety advocate.

Health Care Executive Search Consultant with Furst Group, Phoenix, Arizona – concerned about how all provider executive candidates view the patient experience.

www.furstgroup.com dford@furstgroup.com 520.548.3339 (cell)