When patients feel like hostages

22 Jul

by Carolyn Thomas    @HeartSisters    July 22, 2018

When his 6-year old son became very ill and was hospitalized, Dan Beckham observed how his own behaviour in the hospital began to dramatically change compared to his real life. Although he would readily send a restaurant meal back if it weren’t properly cooked, now when his son received poor care (e.g. a healthcare professional who did not wash his hands), Dan hesitated to be assertive “for fear of alienating the physicians and nurses whose goodwill he needed to maintain.” Here’s how he explained this:

“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.”

Such a reaction is an example of what’s known as Hostage Bargaining Syndrome (HBS), as described in the medical journal Mayo Clinic Proceedings.(1) 

The word “hostage” is deliberately provocative, according to the paper’s lead author Dr. Leonard Berry of Texas A&M University, who told the Institute for Healthcare Improvement:

“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.

“Hostage Bargaining Syndrome, where patients feel intimidated by the doctor, is a very real phenomenon that many patients experience, particularly those with a serious disease or in a state of great vulnerability.”

“Hostage” is more commonly mentioned in the fields of criminology or behaviour science when describing illegal hostage-taking, and surprising to encounter in medical literature. Berry summarized the comparison like this:

“The behavior of adult kidnapped hostages has been categorized as cognitive (confusion and disorientation), emotional (fear and anxiety), and social (withdrawal and avoidance).

“I’ve seen that kind of behavior many, many times observing hundreds of doctor-patient interactions in the health care research I’ve done over the years.”

Berry and his co-authors explained that in HBS, patients and their family members can feel reluctant to assert their own important interests in the presence of those who are providing care. And the higher the stakes of a medical decision, the more entrenched the hierarchy-based roles of patient and physician can become, and the more dependent and powerless we patients can feel.

This makes perfect sense to me and to many other women living with a chronic illness like cardiovascular disease. I’ve been writing for years here on Heart Sisters about our puzzling reluctance to make a fuss about symptoms, or our fear of being labeled “difficult“, or our need to be considered a “good patient“, or our urge to apologize to docs and nurses for things that do not require apologies.

And a recent study published in the journal BMJ Quality and Safety revealed that 50-70 percent of family members with a loved one in the Intensive Care Unit (where the most fragile and vulnerable patients are admitted) “expressed hesitancy about voicing their concerns about common care situations with safety implications” – and, as one of the authors summarized: “True partnerships with patients and families may be limited if they don’t feel supported to voice their concerns.”(2)

A hospitalized patient or their family members, says Berry, may succumb to learned helplessness, making authentic shared decision-making almost impossible. This may include:

  • understating a concern
  • asking for less than what is needed
  • remaining silent against one’s better judgment

Berry cites HBS examples like this one:

“One mother told [us] that when she noticed a subtle change in her child’s behavior during a hospital stay, she informed a nurse who promptly performed a routine set of tests that indicated no cause for concern. But the mother’s worry lingered, and she lay awake rehearsing what to say to the doctor in the morning. She feared being perceived as disrespectful of the medical team’s expertise, or as demanding and over-anxious.”

But he adds that this story could just as easily be that of a 70-year-old heart patient who’s unsure about the cardiologist’s surgery recommendation but hesitates to question it, or a 27-year-old woman with cancer who does not express her fear of treatment-related infertility to her oncologist.

Or even an experienced physician who becomes critically ill, like Dr. Rana Awdish, an Intensive Care doctor at the Henry Ford Hospital in Detroit, and also one of the publication’s co-authors. Her own patient story is a nightmare: she was hospitalized for months, and nearly died. She admits that she, too, felt like a hostage:

“I believed that I needed to make [my care providers] like me in order to receive their best care.”

Dr. Awdish did survive, and went on to describe her own Hostage Bargaining Syndrome experience in an essay published in The New England Journal of Medicineand later wrote a book about it, too (In Shock – My Journey from Death to Recovery and the Redemptive Power of Hope.)

As she explained in an IHI interview:

“I realized that as a physician in my own institution I was, at least in theory, an empowered minority. I was someone who had a voice, some measure of authority and personal agency.

“Yet, as a patient, I didn’t feel at all empowered to be vocal about my needs or fears. I thought about how voiceless you become in many ways just through illness. And, perhaps more importantly, I realized that, if I felt that way, then the experience was far more common than I had understood it to be.

“Once I framed it that way for myself, I felt a responsibility to admit the ways in which my own system had in many ways failed me because if it was failing me, then it was bound to be failing others. What about people who don’t have the medical vocabulary or the foundation of knowledge about what is going on in their body? What about those who don’t know the people in the room or the roles they are meant to play?

“We have an obligation to fix this for the people who can’t tell us we need to fix it.”

But what is the fix when frightened, confused and vulnerable patients feel and behave like hostages?

Dr. Berry and his team have a number of recommendations for healthcare professionals:

“To subvert HBS and prevent learned helplessness, clinicians must be sensitive to the power imbalance built into in the clinician-patient relationship.

“To build trust, doctors should demonstrate compassion, maintain patient privacy, have good communication skills and show interest in the patient as a person. Body language and physical stance, such as sitting rather than standing in front of a patient, signal that the doctor values what the patient says.

“They should then actively facilitate shared decision-making by earning patients’ trust. Clinicians must sincerely convey to patients and their families 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 to blame here. But they have to acknowledge it, and actively work against it, to stop it in its tracks.”

The physician-turned-patient Dr. Rana Awdish agrees, reminding us that in telling her own story, she is not in any way attributing blame or finger -pointing. Echoing the same concerns I raised in a 2014 British Medical Journal (BMJ) essay about doctors who become patients, she added:

“It was an exercise in describing our (medical) culture. This is who we are. This is who I was. I just hadn’t seen it from the patient’s point of view.

“Until you do that, you can’t really appreciate how even the smallest things matter – the things we say casually, the things we don’t think are overheard, the casual way we frame illness for people – all of it matters. It’s even embedded in the metaphors of illness we use – illness as a battle, a war.

“There’s so much that’s unconscious and part of the culture that I think we need to bring to the surface so we can say, ‘This is who we are. Now, is this who we WANT to be?’ Because right now, in this moment, it’s who we are.”

Berry and his colleagues also stress that their message is not a broadside criticism of clinicians. He believes that HBS is mostly a function of a confluence of several 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.

This is especially important to patients who are seriously ill, or are in a state of great vulnerability and dependence. This confluence of factors, warns Dr. Berry, is what leads to HBS.

(1) L. Berry, T. Danaher, D. Beckham, R. Awdish, K. Mate, When Patients and Their Families Feel Like Hostages to Health Care, Mayo Clinic Proceedings, September 2017;92(9):1373-1381 Mayo Foundation for Medical Education and Research.
(2) S. Bell et al. Speaking Up about Care Concerns in the ICU: Patient and Family Experiences, Attitudes and Perceived Brriers,

.

NOTE FROM CAROLYN: I wrote much more about before, during and after hospitalization in my book A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press, 2017). And you can save 20% off the list price by mentioning the code HTWN when ordering directly from Johns Hopkins!

Q: Can you identify with this concept of Hostage Bargaining Syndrome?

See also:

 

15 Responses to “When patients feel like hostages”

  1. RN in NYC August 4, 2018 at 7:54 am #

    I know exactly what you are writing about here, Carolyn. I can so often see that some of my hospital patients seem to be very cautious about how to respond to me. Even a routine “good morning mrs. Jones how was your sleep last night?” greeting first thing sometimes gets a quiet ‘oh just fine’ reply – even when the night nurse going off shift has just updated me that she was in and out of the room every hour on the hour all night long because the patient was so restless or in pain or nauseous, etc.

    This is more true for women than men, generally speaking. Men will just let you know what’s going on. Women especially older ladies don’t want to be a bother. Even when I’m explaining new meds or an upcoming procedure or imaging test and ask them if they have questions or any concerns I could help them with, 9 times out of 10 their answer is ‘no no dear it’s all fine.”

    My observation is also that some of my colleagues clearly prefer the nice cooperative low-maintenance patients! No wonder patients have learned that if they want to stay on the right side of the nurse taking care of them (like having your call bell answered in a timely way) they better be “nice” patients.

    Thanks for this. We sure didn’t learn about this form of patient communication in nursing school.

    Liked by 1 person

    • Carolyn Thomas August 6, 2018 at 7:45 pm #

      Thanks for sharing your professional perspective here, RN. I agree – I think many women have been raised to be “nice”, to not rock the boat or make a fuss.

      But I’ve also heard from men who seemed just as reluctant because they didn’t want to appear weak or needy. The important thing is, as you demonstrate, for medical professionals to be very aware of this phenomenon when it’s observed in frightened or vulnerable patients, male or female.

      Like

  2. Nancy's Point July 29, 2018 at 9:40 am #

    Hi Carolyn,

    Like usual, your post addresses such an important topic. I hadn’t thought about framing it in quite this way, but it certainly resonates.

    I would add, this is not just a hospital issue. For example, when I went along to appointments with my mother when she was gravely ill, it was sometimes awkward, to say the least, to speak up when her oncologist was downright annoying. If I said too much, I did worry he would take it personally and that it would be reflected in his attitude toward my mother. Was that fair to assume? Probably not. But still…

    Taking this further, when she was in a nursing home setting, there were issues almost on a daily basis. Sometimes serious ones, sometimes little things. You might remember the chapter in my book, “Watch Dogs”. I felt that’s what we had to be. And yet, there was that fine line again of saying too much. Eventually, I decided the heck with that line.

    Also, after my breast reconstruction, I sometimes felt I couldn’t be as frank as I wanted to be with my plastic surgeon because he seemed to take his “project” personally. (long story)

    So, yes, sometimes we do feel like a hostage. A bit dramatic perhaps. But as you stated, sometimes we need to be “deliberately provocative” in order to make an important point. It’s not about finger pointing, it’s about making things better for patients. And it should always be about the patients.

    Thanks for writing about this. Lots to mull over.

    Liked by 1 person

    • Carolyn Thomas July 29, 2018 at 10:08 am #

      Thanks very much, Nancy. You brought up an important point – that this kind of “intimidation” is not unique to hospitals or to one area of medicine. Your mother’s care is a good examples of that. In any scenario with a clear authority hierarchy, we’ll see this response – often far different than any of us would choose to respond in regular life (like telling restaurant staff we’d like to send unacceptable food back to the kitchen).

      Two friends and I once spent shifts sitting vigil at the bedside of a critically ill mutual friends for 5 1/2 weeks, and this was a serious issue we discussed every single day: how to make sure that her needs were being appropriately met but not coming across to the hospital staff as being demanding or difficult!

      For example, she had a rare condition typified by bleeding open sores everywhere. This meant she was often lying on blood-soaked sheets (not just little drops of blood, but deep soaked areas. It was hideous!)

      We were explicitly told by staff that the Supply Room (where clean sheets were stored) was off-limits to us non-staff. So we had to carefully plot how to sweet talk the staff into making an exception just for us so we could change her bloody sheets ourselves – thus saving them time and effort!) They said NO however for the first two weeks (!!) until they gradually saw that banning the three of us from the supply room made no sense to THEIR workload. But every staff interaction meant a strategic decision ahead of time, with lots of smiling and chatty compliments to smooth our way…

      It was exhausting to suck up to them every minute of every day, when all we were concerned about was our friend’s care and comfort (and survival…)

      Liked by 1 person

  3. Marie July 28, 2018 at 2:59 pm #

    Your post was once again spot on. It triggered a kind of post-traumatic-hospital-disorder cascade of memories.

    I learned that I (or someone in the family) needed to be present practically around the clock when our loved ones were hospitalized. I am surprised that more readers have not weighed in on this post, for it truly resonated with me. Maybe we all have “Stockholm Syndrome.”

    After my Dad’s cancer surgery, for example, I stayed with him around the clock, sleeping (very lightly) on a cot in his room. I witnessed some marvelous, compassionate action on the part of some of the nurses, and some astonishingly lazy, slipshod nursing on the part of others.

    The hospital room was filthy, but I couldn’t complain too loudly since they could have evicted me. I just went around and tried to clean things myself with hand sanitizer (like when a nurse casually wiped feces off the floor with a dry paper towel and “cleaned” feces off the catheter bag and tube with a washcloth I had just been using to wash my father’s face). The lack of hygiene was appalling! That same nurse removed staples from one of my Dad’s incisions with an unsanitary staple remover she retrieved from her fanny pack, despite my request that she use a sterile one.

    The surgeon who operated on my Dad – let’s call him Dr. X – did successfully remove the cancer, so he was competent at surgery. But he never seemed to read his own chart notes. For example: he asked Dad once, while doing a cystoscopy, “Which kidney did I remove?” He also tried to give my Dad another round of an immunotherapy agent after telling him previously that he could no longer use that one since it could literally kill him due to my father’s adverse reaction. I was present and reminded the surgeon politely of his earlier warning.

    All the while, I had to be “nice” and not complain. My dad was afraid if we said anything at all about these problems, the doctor would fire him as a patient. Honestly, that would have been a blessing. No urologist would accept him as a patient until a full year had passed after his surgery.

    As one who is normally a “pleaser,” “let’s-all-get-along-nicely-together” person, it is not in my nature to make waves, especially in the presence of medical experts, who have worked long and hard to acquire their wisdom. I do truly admire and respect doctors, nurses, and all those who work daily to heal patients.

    So when I have come upon those who fall short of my expectations, I am disappointed but also as forgiving as possible. They are only human.

    But there is a point of “whoah-wait-a-minute” that can happen when a loved one is at risk of harm due to negligence, and I have had to grapple with how to address it without alienating the medical staff, and feeling like a hostage is the perfect description of many of my experiences.

    Eventually, my Dad did let me find him another urologist, and then Dr. X actually called him at home to chew him out, saying he would never take him back as a patient. Wow! Finally, we were freed from this hostage situation. We had tiptoed around this doctor and the hospital staff with fear and trepidation for way too long.

    My dad lived for another few years. He died of heart failure, with my hand on his chest, feeling the final beats of his weary heart.

    I learned a lot at the bedside of my father. He was brave, loyal, and a sublime storyteller. I miss him and all my loved ones. I had already lost two brothers a couple of years before. Then my oldest brother died two days after my father’s death in another hospital. Nine months later, my mother died, as her beloved doctor described it, “of a broken heart.” My Dad always said, “Old age is not for sissies.”

    I will carry his spirit with me as I face my own journey through heart disease.

    Liked by 1 person

    • Carolyn Thomas July 28, 2018 at 3:32 pm #

      Marie, what an unbearable burden of grief you must have endured during such a short period of time… My condolences on your great loss.

      I particularly appreciate your well-balanced review of your hospital experiences with your Dad: you are able to both appreciate what you observed staff doing right, while listing some of the areas that seem shockingly wrong. It’s important for healthcare professionals to see thoughtful, considerate comments from people like you – we are not just trying to make life difficult for them while doing their jobs, but merely doing the same as any person (including these same professionals like Dr. Awdish) would feel compelled to do when the health of themselves or their families is at stake.

      Thanks for sharing this…

      Like

  4. PRwoman July 28, 2018 at 1:35 pm #

    This is eyeopening. Have never heard or seen anything comparing how we respond during a medical visit to being like a hostage too afraid to upset the “captor” to make a fuss or even ask a question — but this is SO TRUE TO LIFE!!!

    This isn’t just about being too polite it can actually be a no-win situation because if we speak up, they may be upset and take that out on our loved ones or us, but if we do not speak up, who is going to protect or stand up for sick people who need to be listened to?

    This is a bad scenario and a very real one too. Thx for bringing this important information to our attention.

    Liked by 1 person

    • Carolyn Thomas July 28, 2018 at 3:14 pm #

      Hello PRwoman – that’s so true: we’re damned if we do (speak up), yet we’re damned if we don’t!

      There is a need for both healthcare professionals and patients themselves to be accountable here – we just can’t sit by and be too afraid to ask questions over such important issues.

      Like

  5. Julia July 24, 2018 at 2:40 pm #

    This should be required reading by all medical personnel.

    Several times I have been in a medical facility and have found myself in such a situation. I have not always felt that I was safe to assert myself as I felt that I would not receive the care or timely intervention if needed. A few times I have made it clear I would not be ignored or not treated with respect.

    Still as a very ill patient, you’re not feeling strong enough to make your feelings known and respected. Those times I did assert myself I felt much better for it. One instance I just got up, got dressed and walked out! And no one asked me why!

    Simply put, sometimes I feel like meat on a hook not a person with feeling and fears like anyone else.

    Liked by 1 person

    • Carolyn Thomas July 24, 2018 at 4:21 pm #

      Oh, Julia – feeling “like meat on a hook” cannot possibly be how any healthcare professional wants their patients to feel at the end of their shift. Why then does this seem so pervasive when patients are at their most vulnerable?

      You’re right, a “very ill” person rarely feels strong enough to be assertive under such circumstances. Personally, I still regret not filing a complaint with my local hospital’s Patient Care Quality Office after I was misdiagnosed and sent home from the ER in mid-heart attack – NOT because of that misdiagnosis, but because before I was sent home, one of the ER nurses humiliated me by sternly warning: “You’ll have to stop asking questions of the doctor. He is a very good doctor and he does NOT like to be questioned!” (The question I’d dared to ask him: “But doc, what about this pain down my left arm?”) I felt so embarrassed at being publicly put in my place like this (from somebody I expected to help me!) that I couldn’t wait to get out of there after believing I’d made a big fuss “over nothing”, and when symptoms worsened, I delayed going back for two weeks because of that embarrassment. The ER nurse retired since then, but I still wonder how many other vulnerable and suffering patients she spoke to over the years in that unprofessional and rude manner, and how many of those patients were just like me – didn’t speak up or report her behaviour afterwards?

      Hospital administrators, clinic managers, and all physicians/nurses must understand how this behaviour hurts patients. As Dr. Berry warns, they must acknowledge it and actively work against it.

      Like

  6. Meghan July 24, 2018 at 7:43 am #

    Wow, “hostage” says it so well when I recall my dh’s car accident in 2009 and everything that happened to him and us in a big city hospital about an hour from our home.

    His right femur was broken in 2 places and his right hip was also broken. He had to have surgery and metal implants to put everything back together. A couple daysl ater, his heart went into a-fib and he was moved to the cardiac unit, which was a good thing because the rooms were large and new and had foldout chairs where I could stay. It was my introduction to advocating for a patient and to becoming his caregiver.

    He was so drugged up on painkillers that he hallucinated much of the time (we still laugh over some of his “visions”). He was totally helpless. One time before I came, his meal tray was left on a table across the room and the call button was on a table on the other side of the room. He really needed me there.

    But the really terrible part of his stay there, which was about 11 days before being transferred to the rehab unit of our local hospital, due to a flu epidemic they weren’t allowing anyone under 17 up into the wards. We have 2 older sons and at the time our highly-sensitive daughter was in homeschool 6th grade. The day after the accident we all arrived when he was in recovery but daughter was not allowed up to see him even after requesting permission from the head of nursing. Not being able to see her dad and to be reassured that he was okay that day absolutely traumatized her. And it totally didn’t make sense that our sons were allowed up when she wasn’t. If she was carrying flu virus, they would have been too. It was just cruel not to let her come up.

    The last day he was supposed to be there, I was planning to drive in, and she asked me if she could come. I told her she’d have to stay in the lobby and she said that was okay. I knew what would happen. When we drove into the parking garage she said, “Mom, get me in to see Daddy.” By then I was so angry about the whole thing that I was ready to threaten legal action. I asked to speak to the nurse manager and we talked in person with daughter right there. She still wouldn’t bend! But they did decide my dh could come down to the main lobby in a wheelchair and see her there — where there were people everywhere and probably a lot more flu germs floating in the air!

    It was a triumph just the same. He was as traumatized as she was at not seeing her all that time. The irony is, they are still adhering to this practice in flu season — we were there again a couple years ago for another problem and saw the signs up. I do understand protecting your patients, but my family really suffered from this added trauma in a difficult time. And I did let the administration know exactly how I felt.

    I wouldn’t have put the word “hostage” onto this situation, but I think you nailed it here!

    Liked by 1 person

    • Carolyn Thomas July 24, 2018 at 11:13 am #

      Hello Meghan – That was quite the ordeal your hubby went through!

      Some hospital practices (like leaving a meal tray or call button too far from the patient!) are just stupid and inconsiderate. But I have to say that hospital rules about patient safety that may seem inflexible do make sense when you’re dealing with hundreds of strangers who all want to come into a hospital to visit vulnerable patients. I worked in a hospital where one year a deadly form of influenza was devastating entire wards, and visiting was simply banned completely during the worst of the outbreak, no matter who you were. As you know, visitors can carry infectious bacteria/viruses even before they show symptoms, which is why those blanket bans exist.

      When precautionary infection control rules are in place, there are several levels of possible protection required, ranging from No Visitors to No Child Visitors to mandatory protective gowns/gloves/masks before entering any room.

      I don’t know why your daughter wasn’t allowed to gown up so she could accompany you upstairs, but having personally witnessed the horrific end results during a bad flu season – like deadly infections spreading like wildfire throughout institutions – I’m always clearly on the side of protecting the patient – all patients!

      I’m not sure at all that your family were “hostages” in the same sense that the study mentioned in this post described hostages (i.e. patients and family who were intimidated by staff and afraid to speak up for fear it might impact their care). By comparison, sounds like you felt quite confident in going directly to the nurse manager and hospital administrator about rules you did not like. That’s the opposite of hostage-behaviour.

      Like

  7. Robin Vetia Hodges-Petruchyk July 22, 2018 at 4:37 pm #

    Hi Carolyn,
    I learned to be a patient advocate when members of my family started becoming sick.
    My own last stay in the hospital before my ICD implant the doctor told me I was barely maintaining a BP and that I had been taking plavix and aspirin too long. I said excuse me, I’m on only one blood thinner and that is the aspirin.

    I went on to tell them that my stent was just outside of my aorta and was 2.5mm the second smallest made. I told them that I can’t stop either as long as I have my heart and asked did they read my medical history. They hadn’t, they only read long enough to find that I had had a heart attack 6 and a half years ago. I was being seen by six doctors, the room fell silent. After a few minutes of them looking at each other to see if anyone had, one stated that we have to go back and check your full chart. My niece was a pre-med student at the time, she said you hit them with the medical terminology and they had no answers. A nurse apologized, she said that that they are used to patients not saying anything to them. They hadn’t even read that I was a critical care patient and my treatment quickly changed and they were told that I should had been put on a heart monitor from the heart hospital, which had failed the tell them that I was in the hospital. When they brought me in the ER was loaded and the nurse that checked me in said they had to put me in a room asap.

    It makes a big difference in how they care for you.
    Take care,
    Robin
    P.S. Sorry it’s a little long.

    Liked by 1 person

    • Carolyn Thomas July 23, 2018 at 4:20 am #

      Hi Robin, I’ve edited your comment for length but left in the part that specifically covered your own hospital visit. Your story illustrates how important it is for patients (and their family members) to be their own best advocates (tough to do when you are really sick!)

      Like

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