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Benefits and risks of including patients on RCA teams

From the June 5, 2008 issue

How do patients and/or family members feel after a serious medical error has happened to them? Confused? Angry? Frustrated? Vengeful? Betrayed? Grief and sorrow if the injuries caused death or permanent harm? While these reactions to an error are rather predictable, three emotions that have been repeatedly described by patients and families during interviews after serious medical errors are all but absent in healthcare literature: guilty, afraid, and alone.(1) Similar to healthcare providers who make errors, patients and family members often exhibit strong feelings of guilt, believing they could have done more to prevent the error or harmful outcome. They fear further harm or retribution for voicing their opinions about the error.(1,2) And they feel totally alone, as clinicians tend to avoid contact with victims of error, isolating them at a time when they are most vulnerable and in need of support. 

How can healthcare providers help patients and families move beyond these understandable but detrimental responses to an error? Honest and direct communication is the best antidote.(1) Although disclosure of an error and an apology from the healthcare provider are crucial, patients and families need more.(1,2) They want to understand how and why the error happened, and they need to know that the event has resulted in learning and action that will prevent similar occurrences. No longer content with being kept at arm’s length,(3) patients and families want more visible roles in analyzing problems and identifying solutions.

Involving patients in the problem-solving process is not a new concept in healthcare. As mentioned in our May 17, 2000 newsletter (Want a savvy participant in your error-prevention program? Put a consumer on your team!), organizations have included patients/consumers on quality, safety, and education committees. More recently, some organizations have opened the door to include patients or families (hereafter collectively referred to as patients) when conducting root cause analyses (RCAs) of adverse events or near misses.(2, 4)

Benefits of Including Patients in RCAs
When properly facilitated, including patients in a RCA can be rewarding for both healthcare providers and patients. For patients, the experience often: 

  • Dispels misconceptions regarding the depth of response to the event by the healthcare provider
  • Reduces feelings of isolation, helplessness, and confusion about how and why the error occurred
  • Reduces blaming attitudes toward self and individual healthcare providers as the system-based causes of errors are uncovered and described
  • Minimizes frustration and anger(1-3)
  • Demonstrates the organization’s commitment to learning and change
  • Increases comfort knowing some good will come from the adverse event(1-4)
  • Helps the healing process(2,3)
  • Enhances forgiveness through direct, honest interaction with the healthcare providers involved in the error.(1-4)

Benefits of sharing the RCA process with patients extends to providers because it:

  • Demonstrates their organization’s transparency regarding errors and responsiveness to the victims of errors
  • Improves fact-finding and learning by including information that may only be known by patients(2)
  • Helps hospital staff heal(2,3)
  • Enhances forgiveness through direct, honest interaction with the patient(1-4)
  • Enriches the outcome of the RCA and the actions selected for improvement
  • Helps the organization reestablish trust with the patient.(2,4)

While little has been written about involving patients in RCAs,(2-4) Exempla Lutheran Medical Center in Colorado offered a rare look at one family member’s response to being included in a RCA of medication mistakes that occurred during treatment of the family member’s daughter: “You have exceeded my expectations and have done far more than I anticipated you would. Thank you for taking this seriously.”(4)

Risks of Including Patients in RCAs
While the benefits of including patients in RCAs are clear, negative consequences that could impact patients or providers should be carefully considered before offering patients an opportunity to participate.

Patient-focused considerations
Traumatic experience. If the adverse event resulted in death or significant loss, having patients participate in the RCA could cause more harm by causing them to “relive” the event again.(2,4) If the patient died, the family will be managing details of life without their loved one as well as dealing with acute grief. Participating in the RCA may exacerbate normal grieving and affect objectivity, which is necessary to improve systems.(2) If the patient requires ongoing care as a result of the error, the family’s mental and emotional energy will be focused on care of the patient. Participation in the RCA could worsen concerns about the patient’s vulnerability or potential for another medical error. Thus, the emotional impact on the family may outweigh the benefit of participation.(2)

Provider-focused considerations
Legal risks. Involving patients in RCAs exposes organizations to legal risks, primarily the loss of confidentiality and possible waiver of any federal, state, or local protections of information pertaining to the analysis of the event.(2) Covert conduct by the patient, such as hidden recorders or cameras to capture information discussed at the meeting, may also be a concern.(2) Although victims of medical errors tend to seek a legal remedy primarily if they feel they have been deceived, sharing confidential information, communications, and the existence of potential evidence with the patient may expose the organization to a greater risk of an adverse outcome if a lawsuit is filed.

Staff discomfort and restricted dialogue. Including patients in RCAs may be an uncomfortable, emotional experience for hospital staff, and it may also inhibit staff dialogue during analysis. The patient’s presence may cause clinicians to be hesitant and cautious when speaking, or defensive and confrontational when responding to the patient’s comments. Under these conditions, open and honest dialogue, which is necessary to perform a thorough, impartial, and credible RCA, may not be possible.     

Recommendations
Despite these risks, involving patients in RCAs can enrich the entire experience if conducted properly with appropriate safeguards in place, as suggested below. 

Reduce legal risks. Assess how federal and state statutes may be impacted by including patients in RCAs, and determine if the organization can handle the process securely. If a decision is made to move forward, develop a policy and guidelines about how to include patients in the quality process for purposes of fact-finding while protecting the integrity of the analysis.(2)

Screen patients. Develop a screening process to determine if the patient is psychologically, emotionally, intellectually, and attitudinally ready and able to participate in a RCA.(2) Be sure the screening process occurs before discussing the possibility of participation in the RCA with the patient, to avoid an expectation that cannot be met if the patient is deemed unsuitable. If necessary, patient participation could be limited to the opening meeting of the RCA team to allow introductions and obtain important details from the patient. If this occurs, be sure to dismiss the RCA team the same time the patient leaves the meeting to avoid feelings of separateness or patient perceptions that the team is talking about him behind closed doors.(2) The patient could also be brought back to the meeting at the end of the RCA to learn about the planned changes.

Prepare patients and healthcare providers. Patients should be provided with detailed information about the RCA process, their role in the process, and the organization’s expectations of the patient during and after the RCA.(2) The healthcare providers on the RCA team should also be screened to ensure they understand and agree with the value of patient participation in the process and feel they can speak honestly and openly in the patient’s presence. It may be necessary to meet with each potential team member individually to allow him or her to express opinions without others present.(4) All healthcare providers selected for the RCA team should then be provided with information about the patient’s role in the process and behavior expectations. (Zimmerman and Amori(2) provide an excellent tool to guide patient and staff preparation.)

Use trained facilitators. RCA facilitators must be skilled in creating a safe environment where an open and honest exchange of ideas can occur for meaningful change.(4) The facilitators should be prepared to address divisiveness, defensiveness, and other behaviors that might inhibit analysis.    

Support the patient after the RCA. After RCAs are completed, open lines of communication should be maintained to keep patients apprised of positive changes that have occurred as a result of their input.(2)

Inviting patients to contribute to the RCA of an adverse event in which they or their loved ones were involved holds great promise to promote shared understanding, rekindled trust, and healing. Patients will undoubtedly bring important ideas to the table that otherwise would not be considered. The yield could be significant, in both supporting the patient’s emotional needs during a difficult time as well as identifying ways to prevent similar harm in the future.

References: 1) Delbanco T, Bell SK. Guilty, afraid, and alone—struggling with medical error. NEJM. 2007; 357(17):1682-83. 2) Zimmerman T, Amori G. Including patients in root cause and system failure analysis: legal and psychological implications. J Healthcare Risk Management. 2007; 27(2):27-33. 3) HCPro, Inc. Mother: patients want to help after errors. Briefings on Patient Safety. 2007; 8(10):1-2. 4) Munch DM. Patients and families can offer key insights in root cause analysis. Focus on Patient Safety. 2004; 7(4):6-7.
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