It Wasn't Personal...

“It wasn’t personal… Nobody intended to harm you… It was a systems error…”

These are the phrases that are often said to patients and family members following a medical error. The reasons behind them are good ones—very rarely are adverse events caused by willful acts of harm from an individual. The vast majority of errors can be traced to problems with the systems of health care, and the “tradition” of assigning blame and punishing individuals does nothing to address the real problems.

But sometimes this line of thinking is taken too far and leads to the discounting of the patient and family experience:

“It wasn’t personal… Physically you are healed, so why can’t you get over it… Nobody intended to harm you, so you shouldn’t feel so betrayed… Don’t take it so personally…”
But for patients and families who are victims of medical errors, it is personal. It is incredibly personal. The damage to the patient’s body is personal. The damage to the patient’s ability to trust is personal. The physical and emotional trauma is personal.

We don’t want to blame the individuals, but how do patients get the acknowledgement and support they need from a “system”? Where is the balance between these two seemingly conflicting ideas? It lies in the recognition that there is a difference between “taking blame” and “taking responsibility”.

There is a popular word used in business—“BLAMEstorming”. When something goes wrong, everyone involved gets together to supposedly brainstorm a solution. But the discussion quickly devolves into figuring out who is to blame, usually the person lowest in the hierarchy (and not present to defend themselves.) That person is punished and everything then continues as before with no changes made to identify or correct what really caused the problem. This activity is about as counter-productive in business as it is in health care.

“Taking responsibility” is completely different. It is the ability to say, “I recognize that there is a problem, and I will make sure it is addressed appropriately, whether or not it was my fault.” It requires a willingness to make it personal—a willingness to connect on a personal level with someone who has been harmed. So, why is this important? After all, it was a systems error, it wasn’t personal.

When patients decide to have a medical procedure, they don’t approach an empty hospital building and say, “That building looks trustworthy; I will have my procedure there.” Patients generally meet with a clinician and decide to trust that person. The trust is personal, so when something goes wrong the feeling of betrayal is also personal. In order for the patient to heal emotionally, the betrayal of trust needs to be addressed on a personal level.

What do patients and family members need to heal? It is specific to that individual but some general needs are: An apology for the harm caused; investigation of the error; disclosure about what happened to cause the error; corrective steps to prevent the error in the future; and support for the patients and family members harmed by the error. The person who takes responsibility for providing these also needs guidance on what these actions entail and how to provide them, or there is a risk they will become checkboxes on a form:

Apology – “The hospital is sorry you think there was an error.”

Investigation – “What makes you think an error occurred? Who did you talk to? Why didn’t you do this…?”

Disclosure – “Nobody remembers what happened, so we can’t tell you anything about it.”

Corrective Action – “Next time you should make sure your history is properly documented in your chart.”

Support – “You can’t seem to get over this; you should go see a psychiatrist.” It is no surprise that the patient or family member feels worse after this exchange and the person assigned by the institution comes to the conclusion that “Disclosure and Apology” doesn’t work.

Again, it comes back to the personal connection. The conversation may be awkward. The patient or family may be angry. They may need to have several discussions over what seems like a long period of time, even years. They may be better one day, and worse the next. This is the nature of trauma response; it doesn’t follow an order or timeline. If the person taking responsibility can think about what they would want if they were harmed, and approach the situation with compassion, the healing process can start even without them knowing all the information or the perfect words to say.

The person taking responsibility should also not be expected to provide all the assistance the patient or family may need, as it may include professional emotional or physical treatment. The goal is for the affected person to feel supported—not abandoned—by the system that caused the harm. By working together for healing, patients, families and clinicians can get away from the adversarial tradition of blame and punishment, keep their personal connection, and even together help repair the “systems” that contribute to adverse events and medical errors.

Megan McIntyre

Father and Son Sharing the Experiences of Illness

There's a nice personal profile and video compilation by an editor of the New York Times discussing how he and his son have both dealt with serious, life-threatening illnesses, and how that has affected their perspectives on life and their relationship. Both have experienced being the patient, each at a young age, and being the supporting family member.

I admire how open they are to each other about their experiences and how it affected them emotionally. From my perspective, I think this probably helps them both to process the experiences and deal with their ongoing treatment.

Patient and Family Day at the NPSF Annual Congress

The folks at the National Patient Safety Foundation have asked that we circulate the announcement below. There is a special pre-congress program planned from the patient and family perspective. It promises to be a very interesting program, and we’d like to spread the word virally. As you can see, Linda Kenney is one of the co-chairs. Please feel free to pass it along to anyone or any organization you think may be interested.

COMMUNITY ENGAGEMENT FROM THE PATIENT AND FAMILY PERSPECTIVE

2009 NPSF Annual Patient Safety Congress

Gaylord National -- Washington, DC

Wednesday, May 20, 8:15am-4:30pm

This unique program has been developed to provide perspective and ideas in support of engaging communities in patient safety work. Patient and family representatives will serve as faculty, providing a perspective from this important stakeholder group. For community members who attend, the day will provide information they need to return home and be better able to work with their communities’ health care systems, as members of hospital committees, volunteers in health care organizations and advocates for better partnerships. For health care providers, this unique day will provide an opportunity to learn directly from patient and family representatives who will teach sections of the course using the techniques they have found useful in their communities, as well as other faculty who will share community-based initiatives that have successfully created positive engagement and improved partnering opportunities in order to improve patient safety.
• • •

FACULTY
Beverley H. Johnson, President & CEO, Institute for Family-Centered Care

Linda K. Kenney, President, Medically Induced Trauma Support Services, Board of Directors, NPSF

Ilene Corina, PULSE of NY, Inc., Board of Governors, NPSF

Terrell Smith, MSN, RN, Director, Patient/Family Centered Care, Vanderbilt University Hospital and Clinics

Don McSurley, Council Member, Vanderbilt Hospital Advisory Council, Attendee, Community Engagement Program 2008

Deborah W. Wachenheim, Health Quality Manager, Health Care For All

Lucilia Prates, Consumer Health Quality Council Member, Health Care for All

• • •
AGENDA
Welcome and Introductions
NPSF Board Member

Understanding Patient Safety and the Importance of Partnering with Patients,
Families, Healthcare Organizations and Communities
Beverley Johnson, Linda Kenney

Engaging Communities in Patient Safety: The Patient Advocate Experience
Ilene Corina

Patient and Family Advisors Bring Patient Safety Change to an Organization
Terrell Smith, Don McSurley

Walking Tour of Poster Display

Lunch and The Magic Wand Discussion

Community Organizations as a Catalyst for Change
Deborah W. Wachenheim, Lucilia Prates

Mapping Out a Plan to Bring Home to Mobilize Your Community
Group Exercise, All Faculty, Facilitated by Beverley Johnson and Linda Kenney

Reflections and Lessons Learned from the Day
All Faculty, Facilitated by Beverley Johnson and Linda Kenney


Make Plans Now To Participate in
Community Engagement from the Patient and Family Perspective

Register Today At
http://www.npsf.org/npsfac/r
For More Information
http://www.npsf.org/

Check Out This Week's "Grand Rounds"

Paul Levy, one of our favorite bloggers, is this week's host of Grand Rounds, the weekly rotating carnival of the best of the medical blogosphere. His topic is "when things go awry," and there are some incredibly powerful patient, family, and clinician stories about medical errors highlighted. MITSS's own Linda Kenney's story is also featured. Click here to read the full post.

Have You Heard the One About a Surgical Checklist?

You may have heard through the media about the use of surgical checklists as one way of making operating rooms safer. IHI (the Institute for Healthcare Improvement) and the WHO (World Health Organization) are working hard on getting US hospitals to test these checklists. Click here for more information.

If you, a family member, or someone you know has brought this to the attention of your doctor, nurse, or hospital administration and received a positive response, we'd like to know about it! Send us a message on Facebook or call us at (617) 232-0090. Get involved in your healthcare -- we'd love to hear from you.

Support Services Are So Important

Below is a link to another horrific story surrounding medical error. It is also another example of why support services for patients, families and clinicians are so crucial following these events.

http://abcnews.go.com/Video/playerIndex?id=4318168

MITSS Announces Second Annual HOPE Award

In honor of National Patient Safety Awareness Week (March 8th through the 14th, 2009), MITSS is pleased to announce that we are now accepting nominations for the Second Annual MITSS HOPE Award.

The HOPE Award was established in 2008 to recognize people -- patients, families, healthcare providers, hospitals (or teams or departments therein), academic institutions, community health centers, grass roots organizations, EAP programs, etc. -- who exemplify the mission of MITSS: Supporting Healing and Restoring Hope to patients, families, and clinicians impacted by adverse medical events. The winner of the Award will receive a $5,000 cash prize to continue their work.

Nominations are due by September 14, 2009. The Award will be presented at the MITSS 8th Annual Dinner and Fundraiser to be held at the Boston Marriott Copley Place Hotel on Thursday, November 12th, 2009, from 5:30 to 10 pm.

Take this opportunity to nominate someone who is doing great work! Also note that self-nominations will be accepted. For eligiblity criteria and submission requirements, click here. If you would like more information, check our website; call Winnie Tobin at (617) 232-0090 or e-mail wtobin@mitss.org; or, mail us at MITSS, 830 Boylston Street, Suite 206, Boston, MA, 02467.