A new awareness

A key force behind the conference was Linda K. Kenney, President of MITSS (Medically Induced Trauma Support Services Inc.), a Boston-based organization founded by Kenney in 2002 after her own experience with a near-fatal medical event. [See “5 Questions with Linda Kenney” for her views on the conference and her thoughts on her work at the forefront of the patient safety movement.]

MITSS has long held that “a lack of transparency, timely communication, and sincere apology have proven to be significant barriers for many patients seeking to recover emotionally after an adverse event.” The conference, organizers said, was aimed at developing new ways to overcome those and other barriers to healing by encouraging a full range of stakeholders to speak frankly about the psychological trauma they have witnessed or experienced.

Melinda B. Van Niel, MBA, CPHRM, another conference organizer and project manager for the Massachusetts Alliance for Communication and Resolution Following Medical Injury (MACRMI), offered this basic example: 

“Say a patient had an error in surgery, and they knew their surgeon well, and then all of a sudden they cannot see that person — they no longer have a relationship with that surgeon. That takes an emotional toll. On the other hand, some people do not want to see their clinicians, because that might create more trauma for them. So we have to better understand people’s wishes so that we can do right by them.”

Attendees represented multiple stakeholder groups including patients, clinicians and clinical researchers, social science experts, policy experts, legal advocates, and members of foundations and safety organizations. Participants worked in mixed groups throughout the day to further outline the challenges and potential solutions for better understanding the emotional impact of harmful events on patients and families. (The effort was supported by a grant from the federal Agency for Healthcare Research and Quality, and additional funding was provided by Beth Israel Deaconess Medical Center, The Risk Authority Stanford, and MITSS.)

The day featured rapid-fire presentations from physicians, patients, and health care professionals from Massachusetts, as well as participants from Texas, California, Virginia, and other states. There was general agreement that emotional harm can erode trust, leave patients feeling violated, and end vital relationships with nurses and doctors.

Moving personal stories

Most moving, as always, were the stories from patients and family members. “It takes a lot of courage on the part of patients and families who have been harmed by error to stand up and work toward a better future,” Bell said of their participation.

Ilene Corina, who is now president of the PULSE Center for Patient Safety Education & Advocacy, spoke about the abandonment she felt in the wake of her toddler’s death.

“I chose my doctor because I really liked him and I trusted him with my child’s life,” she said. “I can accept that a mistake occurred. What I can never accept is the rudeness and dishonesty and lack of empathy. The lawyers just cut us off and the culture was ‘don’t talk.’ We never truly heal from that.”

And Dale Ann Micalizzi, who now counsels parents who have endured medical harm through her Justin’s Hope Pediatric Safety Project, said her traumas and indignities included “being questioned by lawyers for seven hours about my mothering skills.” She added: “It was heartbreaking and terribly inhumane that they were trying to blame it on me.”

While that scenario is still all too common, Van Niel said the conferees focused intensively on the healing needed “even when people have received the elements of communications and resolution, like an apology, explanation, and/or compensation.”

“What we are learning,” Bell added, “is that the emotional toll of harmful events can persist for years, with multiple negative consequences on patients, their families, and even their communities. Better understanding these issues can inform more effective communication strategies and ways to support patients and families. It would strengthen the efforts of CRPS (Communication and Resolution Programs) around the country.”

Said Van Niel: “We are acknowledging that medical errors and adverse events have emotional and psychological impacts far beyond what we know, and that we need to know more about it, and actually do something about it.”

‘We cannot wait’

From a clinical research perspective, the conference attendees made clear that it has become crucial to develop data and conduct scientific inquiry on topics like the epidemiology and longitudinal aspects of emotional harm after adverse events, and to create taxonomies, definitions, and metrics for quantifying that harm to gain much-needed attention.

Other goals include examining how the long-term psychological and emotional impacts of adverse events affect peoples’ willingness to engage with the medical and health sectors for care.

In the short term, however, said Bell: “We learned that there is a high level of urgency when it comes to taking basic steps like encouraging dialog, transparency, and concern for the emotional needs people have. We cannot wait for a three-to-five-year research runway to do some of the things that have to be done now.”

Sue Nevins, whose goal of encouraging communication and reconciliation has had a strong impact in her workplace, said it took time, but “I came to realize that all the emotions I was experiencing were normal, and that help was available.” She added: “I also learned that these events can be traumatic for the health care providers involved. They need support as well.”

And Corina summed up the conference this way: “A program like this one is something only those who have lived through this trauma could really understand. With each patient call we receive now, I feel like I have hope for them that it may not be today or tomorrow but maybe, in our lifetime, there will be recognition that the ‘system’ is capable of hurting us not just once, but twice.”

In the end, Bell said, the conference spotlighted the goal of “better understanding and supporting the experiences of whole patients, and taking responsibility for both physical and emotional harms, to prevent the profound long-term consequences that we are just beginning to fathom.”