The gastroenterologist (GI doctor) shut the clinic door and towered over me, strong, bronzed, and healthy. He checked my chart and saw I had lost 3 pounds. He abruptly barked at me about my “lack of effort” in gaining weight. He yelled that it’s as simple as forcing more food into my mouth, that he could easily do it, if he were me, that I must want to die, and that I “gave up.” Being a hot-blooded 18-year-old, I couldn’t help biting back that he didn’t have an ounce of understanding as to how difficult it is to force in 3,700 calories while constantly battling nausea and lacking a lick of appetite. He didn’t take too kindly to this. I lost 3 more pounds in sweat weight as he hurled outrage at me.
Weeks later, he prescribed a medicine that gave me terrible anxiety — and he insisted that it wasn’t a real side effect, despite pharmaceutical information stating otherwise. Later, he stuck a probe into my stomach without sedation and ignored me as I complained of intense nausea and pain — this ended with me vomiting in a bucket while lying on my back and aspirating. I can’t prove it, but I felt he had me undergo the procedure without relaxants and anti-nausea medication as a punishment for my past unwillingness to sit back and blindly take whatever commands he gave me. In both cases, I begged him to listen to me. In both cases, he let pride get the best of him and I paid the price in excess pain and anxiety.
Hostage bargaining syndrome
Whether the procedure’s handling was truly a conscious punishment or not isn’t the point. Rather, the fact that I felt it was a punishment is important. It showed that I feared the doctor who held my safety in his hands. I learned that criticizing an egotistical man with a medical doctorate, the expert, has harsh consequences. But it shouldn’t be that way. Doctors are service providers, not our masters. As an adult, I should have complete control of my body and the right to question what is being done to it. Instead, I was paralyzed with fear when facing the doctor — I was a hostage. I had to accept his every decision to avoid the possibility of worse decisions.
A study was published in 2017 about hostage bargaining syndrome (HBS). It says the following:
“Patients are often reluctant to assert their interests in the presence of clinicians, whom they see as experts. The higher the stakes of a health decision, the more entrenched the socially sanctioned roles of patient and clinician can become. As a result, many patients are susceptible to ‘hostage bargaining syndrome’ (HBS), whereby they behave as if negotiating for their health from a position of fear and confusion. It may manifest as understating a concern, asking for less than what is desired or needed, or even remaining silent against one’s better judgment. When HBS persists and escalates, a patient may succumb to learned helplessness, making his or her authentic involvement in shared decision-making almost impossible.”
CFers and their loved ones negotiate with their healthcare providers more often than the average person, so our risk of encountering HBS is naturally increased. When some medical professionals dangle the word “noncompliance” in front of our noses, how can we feel safe in questioning their decisions? The word “noncompliance” in our medical records can ruin our chances of getting a lung transplant.
What can we do?
The study gives methods providers can practice to reduce feelings of hostage bargaining syndrome — but those fall on providers, not the patient. We cannot always expect practitioners to have the humility to accept they may need to ease their aggression in our care.
Sometimes, the patient’s solution is as simple as firing the doctor. Luckily, a new GI doctor moved to my clinic, so I asked my CF doctor to quietly switch me from the cruel GI. Despite this switch, I was hesitant to speak up to other doctors from then on. But switching doctors isn’t always an option for people. I can’t count the number of times a fellow patient has said they accept the horrors their doctors subject them to because “there is only one of those specialists in my area.”
If you can’t switch doctors, I recommend speaking with other care providers. A medical team is a team. It has accountability expectations attached. Inform your clinic psychologist or director if you are uncomfortable with a team member’s behavior. They likely know the person in question better than you and can advise you on how to best deal with it — whether through strategic tips or speaking with that person as an advocate for you. If you feel you can’t trust other members of your team or want more formal action, contact your hospital’s social work team or your region’s department of health services.
We already feel hostage to our disease. We shouldn’t feel hostage to our medical team, too.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.