Healing after harm: Addressing the emotional toll of harmful medical events
BOSTON – Injuries and deaths resulting from medical errors can have profound long-term consequences on patients and families. Seriously harmed patients and/or family members who have lost a loved one may describe feelings of neglect, isolation, fear, anger, and despair, among other emotions, many of which can be heightened by organizational silence and withholding of information.
To date, quality improvement programs have largely focused on preventing more easily seen and measured physical harms, and little is known about the emotional and psychosocial harm stemming from medical errors and adverse events. Yet emerging data suggest that these secondary impacts may be just as harmful, or even more injurious, than the underlying event.
Now, a multidisciplinary group of leaders from the Healing After Harm Conference Group, led by Sigall Bell, MD, Researcher at Beth Israel Deaconess Medical Center (BIDMC) and Linda Kenney, Executive Director of Medically Induced Trauma Support Services (MITSS), has established a consensus-driven research agenda with both immediately actionable and longer-term research strategies for health care organizations. The research agenda, designed to create a path forward to inform approaches that better support harmed patients and families, was published online by the Joint Commission Journal on Quality and Patient Safety last month.
The team of four stakeholder groups – including patients and family advocates, clinicians and researchers, social scientists and policy experts, and healthcare foundation leaders – came together at an Agency for Healthcare Research and Quality conference to develop a research agenda for moving the field forward, and in doing so, identified 20 actions that are immediately implementable by hospitals and health care institutions and designed to prevent further emotional harm to patients and families experiencing adverse events and medical errors.
"One of our key findings was that we need to act now; we cannot wait several years for research to be completed while patients and their families are suffering," said Melinda Van Niel, MBA, CPHRM, Project Manager in Patient Safety at BIDMC, who played a pivotal role in helping run the conference. "We outlined 20 of these 'do now' actions that clinicians and organizations can begin working on today. Health care organizations have heightened urgency not only to prevent these events, but also to better support patients and families experiencing medical harm – and the actionable 'do now' approaches can help spearhead that effort."
Some highlights from the 'do now' recommendations include:
- Broaden the organizational approach to harm to include emotional harm,
- Involve patients and families in developing solutions,
- Support access to care by taking steps to address health care aversion following harmful events,
- Develop patient "speak up" initiatives and clinician "listen up" initiatives,
- Establish a patient liaison, adapt existing tools for psychological support, and/or connect harmed patients through social networks to foster healing through human connection, being heard, sharing of strategies, and support,
- Link clinicians and efforts focused on emotional harm, quality improvement, burnout reduction, respect and dignity, and culture change to synergize work, conceptual connections, and urgency.
The research agenda, including the full list of the 20 'do now' recommendations, is available online at the following link: https://www.jointcommissionjournal.com/article/S1553-7250(18)30054-0/fulltext.
In addition to the immediately actionable interventions, the group also identified longer-term research strategies that will inform approaches that better support harmed patients and families. The stakeholder groups readily identified four shared priorities for research: establish patient-centered language for describing harm, reflecting what matters most to patients; describe the epidemiology – how often and in what ways – patients and families experience emotional harm; determine how to make emotional harm and long-term impacts visible to health care organizations and society at large; and lastly, develop and implement best practices for emotional support of harmed patients and families.
Lastly, several recurrent themes emerged from the conference. One of the more sobering lessons that materialized is that harm extends beyond the patient and can have far-reaching implications including negative impacts on family, social networks and community health. Another insight garnered from the conference is that lack of transparency after medical error is a form of disrespect – and that withholding information can compound harm. Finally, Bell and colleagues determined that emotional, psychological and social impacts following harmful events can last for years, and there's urgency to act now.
"Medical errors are a significant cause of death and injury in the U.S.," said Bell, who is also an Associate Professor of Medicine at Harvard Medical School. "Research on this topic is sparse despite the fact that the emotional toll of harmful medical events on patients and families can be severe and protracted, in some cases lasting for years and changing patient and family lives dramatically. As structured programs spread across the country to improve organizational responses to medical errors and adverse events, our findings highlight the critical gap in fully understanding the patient experience and the underlying need to create a roadmap for how to address this gap."
In addition to Bell, co-authors included Melinda Van Niel, MBA, CPHRM, Barbara Sarnoff Lee, MSSW, Elizabeth Lowe, all of BIDMC; Jason M. Etchegaray, PhD, of RAND Corporation; Elizabeth Gaufberg, MD, MPH, of the Arnold P. Gold Foundation; Kenneth E. Sands, MD, MPH of the Hospital Corporation of America; Eric J. Thomas, MD, MPH, Madelene J. Ottosen, PhD, RN, of UT Houston-Memorial Hermann Center for Healthcare Quality and Safety; and Linda Kenney of Medically Induced Trauma Support Services.
This work was funded by an Agency for Healthcare Research and Quality conference grant, R13HS024463. Additional support was provided by The Risk Authority, Stanford; Medically Induced Trauma Support Services; and Beth Israel Deaconess Medical Center.