Carole Hemmelgarn
Three years, seven months and twenty-eight days, or 1,745,280 minutes, it does not matter the measurement of time used, your world stands still and silent. You watch the hands of the clock move and hear the tick tock, tick tock, but you are frozen in time. The sands in the hourglass no longer drop, and yet the world continues moving forward around you, while you are paralyzed. This is what it feels like when you lose a loved one to a medical error. This is what it felt like after I lost my 9-year-old daughter, Alyssa. However, what compounds the pain is when you are not told the truth about what has happened to your loved one and what kind of care they received.
Patients and families realize no provider comes to work with the intent to cause harm. Yet, when harm does occur, and honest and transparent conversations are not conducted, you harm us again, and this is the second tragedy. We can only maneuver through the world in survival mode when we do not know the truth, and we lose the ability to actually live. Having these difficult conversations is not easy, but they are paramount to the healing process for patients, families, providers, and organizations.
There are four things patients and families want after medical harm has occurred: tell us what happened, tell us how you are going to fix the problem, take responsibility, and apologize.1 First, when we say "Tell us what happened," it means what we need and want to hear, not what you feel comfortable telling us, what you think we should hear, or what you want to share with us.2 It is simply about the truth, no more, no less. Second, we need to know that what happened to our loved one is not going to happen to anyone else. If it does, we feel their injury or the loss of their life was in vain.
Doing a thorough event investigation and analysis, or root cause analysis, is an important step in the learning process for the organization, and it assists the organization in providing answers to the patient and/or family.3 The process should include a narrative from the patient and/or family, since they are typically the only constant in the 24-hour-care provided while the patient is in the medical setting.4 Third, taking responsibility for the event is part of the communication process, whether the harm resulted from a human error, a systems error, or both. In some cases, it may be a provider or team that takes responsibility for the error; in other cases, it may be the leadership of the organization. Regardless of who comes forward, it is about displaying empathy and remorse to the patient and family so they feel you genuinely care. Finally, the two little words "I’m Sorry" can be some of the most powerful words spoken after medical harm.5
I believe there is a fifth desire for some patients and families after harm has occurred, and it is being part of the solution to fix the problems that led to the error. Some people need to do this to make sure the problem or system is fixed, others do it to honor their loved one, and for many, it is a way to heal and give back. Yes, many patients and families will walk back through the very doors of the organizations where they were harmed, and they want to be a partner in improving the care that organization provides and in making sure patient safety is a priority. This is a gift health care providers, leaders, and organizations should embrace.
In recent years, there has been a growing movement among hospital systems toward implementing Communication and Resolution Programs (CRPs). These programs continue to evolve since their inception in the 1990s. Some of the key elements of CRPs are reporting and responding to adverse events, continuous communication with patients and families throughout the disclosure process, event analysis, system improvements, emotional support for caregivers, and compensation.6 The Agency for Healthcare Research and Quality (AHRQ) has created a toolkit called CANDOR (Communication AND Optimal Resolution) that provides important resources and educational materials regarding these topics for organizations that want to undertake the CRP process.3
Communication and Resolution Programs help provide for the many different needs of individuals after harm. In the past, patients experienced only silence and abandonment after a medical error. CRPs and their participants now realize the importance of talking with the patient and family immediately after harm and continuing those conversations until all of their questions have been addressed and answered. Disclosure is not an event, it is a process, and it does not end until the patient or family says it ends, which can take days, weeks, months, and even years. This occurs when they are able to find a space and place in their heart to store the pain, try to forgive, and learn how to live in a different world.
While some patients and families may need monetary compensation, this is not always the case. For patients who require ongoing health care, compensation is necessary and appropriate. Others may need immediate assistance to cover daily living expenses while they cannot work or to pay for funeral costs. When there is loss of life due to a medical error, some families do not want any money because they feel you cannot put a ‘price’ tag on their loved one’s life; others, may need compensation in order to survive financially and to take care of their children. However, some patients and families want compensation that benefits the organization and honors their loved one. This can be a yearly Grand Rounds lecture in the name of their loved one, staff training around the error, protocols implemented, or a bench, piece of artwork, or room dedicated in their loved one’s name. There is a great fear among families that their loved one will be forgotten, so knowing their name lives on can be a powerful form of compensation.
It is important to have a designated plan after medical harm occurs, but equally, if not more important is recognizing there is not a one-size-fits-all program for patients and families. Their needs can vary greatly based on race, ethnicity, age, language, culture, religion, family structure, socioeconomic status, and the degree of harm or loss of life. The significance of having a well‑developed, leadership-led, and staff-supported CRP cannot be stressed enough. Even though the primary focus of the program is to help patients and families who have experienced harm, the larger programmatic scope is to identify those latent issues in the system so that they never reach the patient, while keeping those providing patient care supported and safe as well.
Three years, seven months, twenty eight days, and millions of minutes of endless pain that could have been alleviated. No one should ever have to wait that long to find out answers about what happened to their loved one, have the organization accept responsibility, and say the two most powerful words "I’m Sorry" and mean them. The barrier to not being honest and transparent with patients and families can no longer be fear. It is unacceptable. It is time to turn the hourglass over and shift the paradigm. Instead of letting fear drive the actions and behaviors after harm, it is the mindset of courage and ethical obligation that will lead us to the next frontier.
Acknowledgments
I would like to thank Brian Parker, MD for his thoughtful guidance in composing this commentary.
Address correspondence to: Carole Hemmelgarn, 6576 Millstone Street, Highlands Ranch, CO 80130 or email.
References
1. Full Disclosure Working Group. When things go wrong: responding to adverse events: a consensus statement of the Harvard Hospitals. Boston, MA: Massachusetts Coalition for the Prevention of Medical Errors; 2006.
2. Fein SP, Hilborne LH, Spiritus EM, et al. The many faces of error disclosure: A common set of elements and a definition. J Gen Intern Med 2007; 22(6):755-61.
3. Communication and Optimal Resolution (CANDOR) Toolkit. Rockville, MD: Agency for Healthcare Research and Quality; Content last reviewed May 2016. Agency for Healthcare Research and Quality, Rockville, MD; 2016. Accessed January 30, 2017.
4. National Patient Safety Foundation. RCA: Improving Root Cause analyses and Actions to Prevent Harm. Boston, MA: National Patient Safety Foundation; 2015.
5. Wu AW, Huang I, Stokes S, et al. Disclosing medical errors to patients: It’s not what you say, it’s what they hear. J Gen Intern Med 2009; 24(9):1012-7.
6. Gallagher TH, Farrell ML, Karson H, et al. Collaboration with regulators to support quality and accountability following medical errors: The Communication and Resolution Program Certification Pilot. Health Serv Res 2016; 51(Suppl 3):2569-82.
