A recent article in Mayo Clinic Proceedings outlined a phenomenon called “hostage bargaining syndrome” (HBS). According to its authors, patients and families who experience HBS are fearful and confused and behave as if they must negotiate with clinicians for their health. One of the article’s co-authors, Leonard L. Berry, PhD, MBA, is an IHI senior fellow and professor at Texas A&M University who studies service improvement in cancer care. IHI recently spoke with him about the article’s origins and how HBS can be prevented.
What made you and your co-authors decide to write “When Patients and Their Families Feel Like Hostages to Health Care”?
I got the idea from one of my coauthors, Dan Beckham. Years ago his six-year-old son was hospitalized with a severe illness.
Dan, an accomplished health care consultant, told me how his behavior as a consumer dramatically changed in the hospital. He contrasted this with how he would behave if he was out to eat and his son received poor service. He described how he would send a meal back if a restaurant hadn’t cooked it properly, but he hesitated to speak up when a hospital care provider didn’t wash their hands.
We open the article with a condensed version of Dan’s story: “I felt dependent and powerless, as if my son was a hostage to the care he received and the system that delivered it. It was as though I was compelled to negotiate for his safe release from potential harm.”
Dan and I wanted to start a conversation in the medical community about the patient as hostage idea because it wasn’t being discussed in the medical literature. We decided we should bring it into the light because hostage bargaining syndrome often happens, but it doesn’t have to happen. We wanted to make clinicians more aware of this syndrome and provide some guidance to diffuse it.
After Dan and I discussed the idea, I contacted Kedar [Mate, IHI Chief Innovation and Education Officer] to see if he was interested. He immediately said, “Yes. This is important. I see this all the time.” Then, I knew Tracey [Danaher, a researcher and health services writer in Australia] would be interested, and so we got her involved. I later invited Rana Awdish to join us and she helped improve the article.
Did you have any misgivings about using the word “hostage” when you named this phenomenon?
We knew it was going to be provocative. We say in the article that we recognize this is a startling term to use in a medical journal, but we felt we had to use it to bring attention to this issue and to describe it appropriately.
The word “hostage” hasn’t been used in the medical literature until now, so we looked for literature on hostages in the non-medical literature — sociology, for example — and we found this great overview of the research on criminal hostage-taking. We summarize it in our article: “The behavior of adult kidnapped hostages has been categorized as cognitive (e.g., confusion and disorientation); emotional (e.g., fear and anxiety): and social (e.g., withdrawal and avoidance).” I’ve seen that kind of behavior many, many times as I’ve observed hundreds of doctor-patient interactions in the health care research I’ve done over the years.
How would you characterize the response to the article?
We’ve received considerable feedback and thus far it has been extremely positive. I don’t expect that everything we’re ever going to hear is going to be positive, but it’s been good so far.
I’ve been an academic writer for a long time. Sometimes, when you’re working on a piece, you just feel in your bones that [what you’re writing] is important, it’s going to work, and it’s going to strike readers the way you want it to strike them. I felt that all along about this article, even though it was provocative.
The article was rejected when it was first submitted. What made you and your co-authors decide to appeal the decision?
Very rarely in my career have I appealed a rejection because usually you’re just wasting your time. [Editors] make a decision, and that’s it. But then I thought about it for a couple of days, and decided to appeal.
The original article had gotten through the internal review process, and then it went out for external review. The first reviewer was very positive. They noted the importance of the topic and how well-written the article was and highlighted eight or nine points to improve in any revision of the manuscript. I felt we could address each one.
The second reviewer agreed that our article was well-written and covered an important topic, but argued that we had no evidence for HBS. We were introducing a new concept, but we had made connections to established, related literature on learned helplessness, shared decision-making, and white coat syndrome.
We essentially said in our appeal, “Give us another chance. We can respond to reviewer #1 and reviewer #2 is off base.” The editor accepted our appeal, and advised us to address the first reviewer’s feedback, and resubmit it. I could not have asked for a more fair response.
You include a story from Dr. Rana Awdish about her own experience as a seriously ill patient. She says, “I believed that I needed to make [my care providers] like me in order to receive their best care.”
Rana put her story in the article in the last revision. I think it helped get the article accepted.
Dr. Awdish is a critical care doctor who works in the ICU of her hospital. She herself was critically ill, hospitalized for months, and nearly died. And she admits she felt like a hostage.
My hat is off to her. She’s a brilliant physician, and a brilliant writer. She’s a very brave person to share her story publicly.
An important point you make in the article is that HBS isn’t inevitable. How can clinicians prevent it?
I think that’s the most valuable contribution that this article can make. One of my favorite reader responses said that we brought an elephant into the room, and we gave it a name. By naming it, it’s easier to have a conversation about it.
We made a conscious attempt from the beginning — not just after the article was initially rejected — to clarify that our message was not a broadside criticism of clinicians. HBS is mostly a function of a confluence of factors — the knowledge disparity between clinicians and patients; the fact that we, as a society, tend to put doctors on a pedestal; the fear patients often have of offending care providers and getting less care or less attention as a result. Patients, especially patients who are seriously ill, are in a state of great vulnerability and dependence. This confluence of factors is what leads to HBS.
To subvert HBS and prevent learned helplessness, clinicians must be sensitive to the power imbalance built into in the clinician-patient relationship. They should then actively facilitate shared decision making by earning patients’ trust. Clinicians must sincerely convey to patients that it’s safe to communicate their concerns and priorities, ask questions, and contribute knowledge about themselves to help make the best possible clinical decisions about their care.
The vast majority of doctors don’t want their patients to feel like hostages, and are not at blame here. But they have to acknowledge it, and actively work against it, to stop it in its tracks.
Note: This conversation was edited for length and clarity.
You may also be interested in:
Len Berry will be a guest on the November 21 WIHI: When Patients Feel as Powerless as Hostages.
Mayo Clinic Proceedings – When Patients and Their Families Feel Like Hostages to Health Care
What Happens When Health Care Providers Fail One of Their Own? – interview with Rana Awdish, MD, one of the keynote speakers at the 2017 IHI National Forum (December 10–13, 2017).