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Download a PDF of the Current Issue 2015 Volume 12 Number 3 July- September

Managing Disclosure Of Adverse Events

Robert L. Wears, M.D., Professor Department of Emergency Medicine

Introduction There are two groups affected by adverse medical incidents, and historically, we have not done a good job of helping either. The first group is patients and their families; the second is the health care providers involved in the incident. Patients and families, who are most obviously affected by and adverse event need several things from their caregivers.

• First, they need to know what happened. All too often, once things start going wrong, caregivers become unavailable or uncommunicative with patients and families. The resulting uncertainty itself is painful, and silence is easily interpreted as lack of respect and compassion.

• Second, they need an apology. They need to hear someone say that they are truly sorry for what they have suffered. Unfortunately, while communication after an adverse event is often technically correct, it may not convey the deep sense of sorrow and regret felt by caregivers who have been involved.

• Third, some will need medical and financial assistance and compensation to help them deal with their loss.

• And finally, they need to know that something is being done to prevent similar tragedies in the future. For many, knowing that some good may come despite their tragedy helps mitigate their suffering.

Health care professionals involved in the incident also need help as well. They cannot experience the horror of the patient or family, but their pain and devastation are no less real. Initially, they need emotional support and empathy; but professional culture and training does not support disclosure, even to peers. Feelings of shame and fears of appearing less than competent prevent open exchange. While we are generally noncritical of colleagues after an error, our reassurance is often grudging, and the unconditional support that is needed is uncommon. The opportunity to explore the incident in safety is important to their accepting responsibility, which can be necessary for constructive change.1 Importantly, they need to be able to talk to the patient and, when appropriate, to apologize. Finally, they, too, need to know what can be done to prevent future tragedies. Interestingly, both groups can be helped by the same actions – disclosure and apology – but despite a clear ethical duty to disclose, 2-4 and sometimes legal requirement, it does not happen as often as it should.1 Why is disclosure so hard? There are several reasons: the discomfort we feel in dealing with failure; a lack of knowledge of how best to proceed in addressing these sensitive issues; and, by no means least, fear of litigation. The goal of this article is to review methods for dealing with the second of these issues – not knowing what to say or how to say it. This is not the only barrier to effective disclosure: organizational policies and resources must be aligned, and legal issues must be acknowledged and addressed, but those issues are too strongly contextual to be addressed in a general article. A Strategy for Disclosure Buckman5, 6 and others7-9 have developed a general strategy for guiding these and other difficult discussions. While written strategy cannot substitute for experience, it can still be useful, as experience will be gained over time. The specific strategy here uses the mnemonic C-O-N-E-S as a guide (Context, Opening shot, Narrative, Emotions, and Summary). 1. C – CONTEXT. The first step is to ensure the context of the discussion is appropriate. This means getting both the physical and the emotional environment right. a. Physical environment. The conversation should take place in a private area, away from distractions and interruptions. The seating should be arranged so there are no barriers between you (and other health professionals, if present) and the patient or family. In particular, this means that you should not be seated on opposite sides of a desk or table. Your eyes should be on the same level as theirs, or lower – never higher. b. Emotional environment. First, “take your own pulse;”10 take a deep breath and identify your own emotional state, which is likely to be a mixture of fear, discomfort, distaste, and embarrassment. It is good to make eye contact unless there is strong anger or emotion in the air, when it might seem either aggressive or intrusive. Discipline yourself to focus on listening. You will often know what the patient or family members are going to say, but do not interrupt – plan to keep quiet and allow them to say it. 2. O – OPENING SHOT. Begin with an initial statement that sets both agenda and tone for what is coming, for example, “I have something difficult and important to discuss with you….” If the circumstances warrant, now is an appropriate point to insert the “S” word: “I’m sorry to say that….” (Sometimes in the immediate aftermath of an adverse event, it will not be known exactly how it happened, whether there was an error, etc. It is just as important not to fall on your sword prematurely as it is to apologize sincerely when an apology is due.) There are many alternative formulations of this warning shot (e.g., “I’ve discovered something I have to talk to you about….”) and it is important not to try to memorize a set speech; find a way to express this content in words that sound natural coming from you. It is often useful to pause here to allow some response. 3. N – NARRATIVE. Set out events in order, as best you know them at this time. Go slow! This material will be difficult for the patient or family to understand and absorb, given the circumstances. It may need to be repeated several times. Explain the uncertainties, thinking, and decisions at each important juncture. Sit close and talk softly. Remember that often the initial theories of how things went wrong are borne out by a fuller analysis, so be careful not to speculate or leap to conclusions. Stick closely to the facts and admit knowledge gaps and uncertainties, but assure the patient or family that you will update them with more information as the analysis proceeds. 4. E – EMOTIONS. All emotional expressions need to be acknowledged. Health professionals often feel uncomfortable with emotional responses, but failing to acknowledge them makes everyone even more uncomfortable. If no emotional response if forthcoming, it is often useful to be silent for a while. This acknowledges that you recognize it is “their turn” to speak; most people will eventually speak up to fill a long silence. If this does not work, it is permissible to probe a little, not by direct questions (e.g., “How do you feel about that?”), but rather by indirect suggestion (e.g., “You must be shocked to hear this?”). Acknowledge the emotion in an empathic response involving the following steps: a. Identify the emotion. Is it fear, anger, shock, embarrassment, etc.? b. Identify the source – is it coming from the patient or family, or is it your own emotion you are recognizing? It is okay to refer to your own feelings, especially when at a loss – “I don’t know what to say….” c. Respond in a way that connects the two. You do not need to feel the emotion yourself or even agree with it or think it is legitimate, but you must acknowledge it: “Hearing this must be a terrible shock, be terribly frightening, disturbing, must be awful for you.” Some interviewers can skillfully use a repetition technique to acknowledge what the patient or family is feeling. This involves using a word from the subject’s last sentence in your next sentence, especially if you can “match up” sensory modes. (For example, if the patient says that they cannot see how this happened, you might respond that you see what they mean, and so on.) It should go without saying that you should never say something like, “I know how you feel.” Even if you do (which is unlikely), the patient or family will not know that and will not believe you. d. Talking is an important way, but not the only way, to acknowledge emotion. Simple gestures, such as offering a tissue for crying, also acknowledge and legitimize emotional distress. The goal in all this is to legitimize the emotion and to make it possible to talk about shock, disappointment, and anger. Now the conversation has turned to talking about feelings rather than the facts of the case. 5. S – SUMMARY/STRATEGY. Begin closing the conversation by preparing a plan for the future. Establish a time for the next contact and ways to get in touch when new information (e.g., results of an autopsy or further investigation into the mishap) becomes available. The next contact should be reasonably soon, even if there is not likely to be any substantive new information at that point. This will allow the patient or family to digest the information they have been given and raise questions that do not need to wait for further results. Plans for future care, if required, are especially important at this point. The patient and family should be given your contact information and also a contact for the institution’s representative. This should be convenient for the patient and family– it should NOT be the main switchboard number or the pager of the resident on call! Finally, elicit questions in a way that does not make the patient or family feel that this is their last chance to ask. For example, “Any questions for now? We will talk again later, but anything for now?” Many people will not be able to formulate the questions that are most important to them at the initial disclosure meeting, so it is important to leave the door open. Sometimes, the questions “for now” will lead you to recapitulate the narrative and emotion steps of the strategy again. Several iterations may be required until the conversation can be closed. Conclusion There are a great many additional issues surrounding disclosure that have not been discussed here, including things like what should or must be disclosed, who should be present at these sessions, and who should take the lead in disclosing. Institutions should develop their own internal guidance to assist in making decisions on these issues. References 1. Wu AW, Folkman S, McPhee SJ, Lo B. Do house officers learn from their mistakes? JAMA 1991;265(16):2089-94. 2. National Patient Safety Foundation. Talking to Patients about Health Care Injury: Statement of Principle. http://www.npsf.org/html/statement. html, accessed 24 December 2001. 3. American College of Physicians. Ethics Manual. http://www.acponline.org/ ethics/ethicman.htm#disclose, accessed 6 July 2001. 4. Joint Commission of Accreditation of Healthcare Organizations. Revisions to Joint Commission of Standards in Support of Patient Safety and Medical/Health Care Error Reduction. http://www.jcaho.org/standards_frm. html, accessed 7 July 2001. 5. Buckman R, Kason Y. How to Break Bad News. Baltimore, MD: Johns Hopkins University Press; 1992. 6. Buckman R, Wears RL, Perry SJ. Dealing with Anger and Other Emotions in Disclosure of Adverse Events. In. Ottawa, Ontario: Cinemedic, Inc.; 2004. 7. Iserson KV. Grave Words: Notifying Survivors About Sudden, Unexpected Deaths. Tucson, AZ: Galen Press, Ltd; 1999. 8. Jurkovich GJ, Pierce B, Pananen L, Rivara FP. Giving bad news: the family perspective. J Trauma 2000;48(5):865-70; discussion 70-3. 9. Adamowski K, Dickinson G, Weitzman B, et al. Sudden unexpected death in the emergency department: caring for the survivors. CMAJ 1993;149(10):1445-51. 10. Shem S. The House of God. New York, NY: Bantam; 1978.