At least a couple times a year, I sit with a new patient who is undergoing surgery, radiation, and/or chemotherapy and who turns still with shock when I question, "Can I ask what the doctors have told you about your cancer?"
"I have cancer?!" would be their first words of incredulity.
As a palliative care physician (read Post 1: What Exactly Does a Palliative Care Specialist Do?), one of my responsibilities is to help patients and family members understand their medical situation, including diagnoses, best case and worst case scenarios, expected trajectories (read Post 67: The Difference Between "Potential" and "Likely"), pros and cons of different treatment plans, the range of prognosis or life expectancy, and big questions they might be expected to answer in the future as well as the burdens they might be expected to adapt to day to day.
I also clarify misconceptions, which I have come to realize often start when healthcare providers talk rapidly and use "big words" (that is, medical jargon) while speaking directly with a patient or family member. They might say, "The MRI is positive for lesions on your liver" or "The malignancy has metastasized to the ribs." Or, healthcare providers may use ambiguous words open to interpretation. "Radiation will shrink the spots on your lung."
I have met quite a few patients undergoing procedures, radiation, chemotherapy, and/or immunotherapy for their lesion, tumor, mass, spot, or malignancy who do not realize that they have cancer.
A number of people (especially adult children trying to protect their parent) may ask, "If the word 'cancer' were to upset someone and they're doing everything they need to do anyway to get the cancer treated, why do they need to know they have 'cancer'?" (Read Post 34: Should We Tell Mom about Her Diagnosis? - Two Questions to Consider.)
That is a really good point, and this question should be asked on an individual-by-individual basis.
Sometimes people do want to defer all major news, especially bad news, and all major medical decision making, especially difficult decisions, to a trusted loved one. Though these people may have the alertness and capacity to understand complex information and make medical decisions themselves, they may still deliberately make the choice to have their medical power of attorney talk to healthcare providers on their behalf [read Post 4: Eleven Common Myths about the Medical Power of Attorney (MPOA)].
If one were to make this decision, we should honor it. If they were to later change their mind and wanted to know the details of their medical situation, their choice at that time should also be honored. We should all have the right to hear potentially life-altering medical news when we are most ready to hear (read Post 13: Sometimes It's Denial, and Sometimes It's Just Really Bad Timing and Post 70: It's Not Cowardly to Not Want to Know).
However, more often people say, "I want to know what's going on with my own body. I want to know what's causing these changes in my body and why I'm having trouble doing things that I used to love to do or things that I took for granted that I could do on my own. I want to understand, so I can have a say. I want some control back!"
Generally, the first step to regaining a sense of control is to truly understand the pertinent information and treatment options relating to your body and your health. If you do not understand the medical jargon - or the vague wording - that are being thrown at you, you may never really understand what is going on with your body or what is being done to your body. It can be both overwhelming and frustrating to not know exactly what is being said or to not know enough to ask the specific questions that will get you the answers you are looking for.
(I can relate to this sense of ignorance outside the medical field. I have spoken with the service advisor at the car dealership and nodded "Uh-huh, uh-huh," agreeing to having something replaced, not really understanding what was being replaced, why, or if it was even really necessary at the time. I remember each time the service advisor talking rapidly, waving his papers in the air, gesturing towards my car with his other hand, and looking at me expectantly. I would feel caught off guard and embarrassed that I did not understand exactly what he was saying. Is this basic information that everyone knows?, I would wonder. And I would often forego asking questions for clarification; in fact, sometimes asking questions would feel like I were questioning the service advisor's expertise. And I, of course, would then pay for this replacement piece, labor, and service that I still would not be able to explain days later, leaving me with a sense of discontent regarding the whole experience.)
In the medical arena, I have often witnessed patients and family members being "bombarded," or even "ambushed," with technical details and complex-sounding words.
Once, while working as a hospitalist (prior to my days as a palliative care physician), I started to review with my patient an update of the day's plans. Suddenly, a neurologist marched in and launched into a spiel about "TIAs," "ischemia," "MRIs," and "antiplatelet agents" before he each reached the patient's bed. The neurologist briefly paused to ask, "Any questions?" The sudden pause from the neurologist startled my patient, who replied, "No?"
The neurologist nodded his head, commenting, "I'll be back tomorrow to check on you," and rapidly turned around to stride out the door. I looked at my patient, who looked at me. After a moment, I asked, "Do you want me to explain what he said?" My patient looked embarrassed - and why should he be the one to feel embarrassed? - as he replied, "Yes, please."
Sometimes we interact with healthcare providers who take the time to use everyday language and pause to gauge our understanding during the course of conversation. Sometimes we interact with healthcare providers who choose - either purposefully or unknowingly - to stick to the comfort of their medical jargon, perhaps hiding emotional discomfort behind technical terms.
In these situations, what can we do to increase the chances of having a meaningful conversation with a healthcare provider?
1. Arm yourself with the intention of speaking up in case you realize you do not understand certain words or phrases. Prepare yourself with this intention prior to starting conversations with your healthcare providers so that you are not caught off guard and remain silent.
2. Consider interrupting at the first use of medical terminology you do not understand and politely asking the healthcare provider to use "everyday language" so you can better follow along. "Excuse me, I apologize for interrupting! I don't understand what you're saying. Can you please use non-technical words?"
3. Consider paraphrasing back what you think the healthcare provider said when they ask if you have any questions. Ask them to clarify anything that you yourself would not be able to later explain to family members. "Can I paraphrase back to you what you just said, and you can correct me if I misunderstood anything? I have a bunch of family members I need to be able to explain this to."
4. If you do not have a chance to ask as many clarifying questions as you later realize you would have wanted to ask, consider asking other healthcare providers (such as your hospitalist in the hospital) or calling the doctor's office (either your primary care physician or the specialist themself) to leave a message with the nurse to clarify.
Whether or not a healthcare provider were to view your questions and attempts to understand as a burden, know that your having a good understanding of what is going on with your body and your health should always be an expectation. Politely interrupt, ask, and paraphrase as often as you need to as you advocate for your best medical care.
Comments