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http://www.ihi.org/communities/blogs/adding-insult-to-injury-addressing-the-long-term-impact-of-patient-harm?utm_campaign=tw&utm_source=hs_email&utm_medium=email&utm_content=71899479&_hsenc=p2ANqtz-_BVGdIisaDAVbCW8OfP3Ty-Q7Tb6DWIlpQ3bcu6tuRC3YVbbCWxE66udFu16K5Jc5KhouZmRlnDVRHCSLcU3KGpiv3Vw&_hsmi=71899479

For example, Bell describes a study published by Southwick and colleagues in BMJ Quality & Safetyin which they analyzed patient reports following medical harm. Many patients described a physical injury that was compounded by lack of communication and transparency. Bell asserts that lack of full disclosure is disrespectful to patients and family members. “Some try for years to make sense of what happened, battling uncertainty and grief,” she says. “They also worry that nothing was learned by the organization and, therefore, the error and their loss occurred in vain.”

Why It Matters
Patients and families can suffer for months or sometimes years after being harmed by a medical error.

Addressing the Long-Term Impact of Patient Harm

By Sigall Bell | Thursday, March 7, 2019

Photo by Nik Shuliahin | Unsplash

Sigall K. Bell, MD, will never forget the image. The Director of Patient Safety and Discovery at OpenNotes, Beth Israel Deaconess Medical Center, and Director of Patient Safety and Quality Initiatives, Institute for Professionalism and Ethical Practice, co-led a conference a few years ago. The goal of the meeting was to define a research agenda on understanding and preventing emotional harm for patients and families following medical errors. 

Patients and family members, clinicians, researchers, social scientists, policy experts, and foundation representatives were present. Some attendees had lost children or other loved ones because of medical errors. “I was struck by the courage of the remarkable patients and family members who showed up,” Bell recalls.

During one activity, attendees chose an image from a gallery to represent their experience of a medical error. One person selected a sea turtle and talked about feeling underwater in a silent world. The attendee described “profound isolation, feeling invisible and unheard, with nobody around to help navigate this new reality,” Bell recalls. “They felt the health system didn’t know about their suffering.” 

“To this day,” Bell remarks, “the stories that came out of that conference still have my mind turning about how to develop a better system to more fully support patients and families after they’ve experienced medical harm.”

Emotional Harm After Medical Error

The safety movement has focused most of its efforts on preventing errors and adverse events while patients receive medical care. But when harm occurs, the extent of the emotional impact on patients and families — and how to support them in the immediate and long-term aftermath — is not well understood. 

According to Bell, patients and families can be overwhelmed by the emotional toll of serious harmful medical events. Some describe post-traumatic distress related to the event, guilt about not being able to prevent it, fear of retribution if they raise concerns, fractured trust, and isolation. Bell notes that, although there is a growing emphasis on transparency, some health care organizations may withhold information, leaving patients and families struggling to piece together the truth about a harmful event. “This can lead patients to experience additional emotional or psychological harm, such as depression, self-blame, or trauma-related anxiety,” she says.

For example, Bell describes a study published by Southwick and colleagues in BMJ Quality & Safetyin which they analyzed patient reports following medical harm. Many patients described a physical injury that was compounded by lack of communication and transparency. Bell asserts that lack of full disclosure is disrespectful to patients and family members. “Some try for years to make sense of what happened, battling uncertainty and grief,” she says. “They also worry that nothing was learned by the organization and, therefore, the error and their loss occurred in vain.”

Different Forms of Long-Term Impact

An IHI national survey in 2017 found that 73 percent of the patients who experienced harmful events reported some form of long-term impact. According to Bell, “These effects unfold in their homes, families, and communities, often long after they leave the hospital, and can have huge individual and societal costs.”

Bell describes a study of patients and families who experienced medical error led by Madelene Ottosen and Eric Thomas, her collaborators at the University of Texas Houston-Memorial Hermann Center for Healthcare Quality and Safety. Researchers found that patients and families described many kinds of long-term impacts lasting five to ten years — sometimes even longer — after the event.

After the qualitative analysis, the research team categorized the long-term impact into four different categories:

  • Psychological impact — Examples of this include vivid memories of the harm event, anger, anxiety, disruption of trust, and a sense of abandonment. Some patients and families suffered severe depression, PTSD, and even suicidal ideation.
  • Social and behavioral impact —This category had both positive and negative components. Some people became more proactive as patients, asking for their records or speaking up about concerns, for example. Some patients avoided any contact with health care following their experience.
  • Prolonged physical impact — Patients described physical consequences long after the initial incident. For example, according to Bell, one patient became irreversibly blind in both eyes due to an error during surgery. A once avid tennis player was never able to return to the game after a delay in treating a serious infection led to multiple surgeries.
  • Financial impact — Patients and families described not being compensated for years of ongoing surgeries, therapies, and medications. Others had difficulty maintaining regular employment or stopped working altogether.
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G M Rigg

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