Making medical decisions as a patient or as a caregiver for a patient can be a daunting task. It is necessary, but you have little knowledge. You may have searched the internet for answers, but you may get lost even more with medical jargon. You hear things from families and friends, but the situation may not be exactly applicable to you. I will share my experience as a caregiver for my dad and tips on making medical decisions as a caregiver or a patient, so you don’t make the same mistakes. The experience was 13 years ago. However, the same principle applies as patients are always placed to decide without much guidance.
Mistake #1, I was not present with my dad when he had to make the medical decision.
When my dad had to choose between chemotherapy or surgery to treat stage 3 esophageal cancer, he understood the choices having relatively equal prognoses. I did not have a babysitter to watch my toddlers, so he had to go alone.
I asked my dad what the conversation was like. He explained it exactly as above without much detail, but it was clear that he had a big fear of the option of surgery to begin with. His friend had to use a device to speak after his surgery because he lost his voice, he shared. I was not sure if my dad shared this fear with the surgeon. Knowing my dad, I was doubtful if he asked many questions he might have had. Although quite fluent in English, he was a quiet person in general.
Mistake #2, I trusted the healthcare system and the healthcare professionals entirely.
I was relatively healthy that I did not have to use the medical system in the US. I had no medical knowledge as my background was in art and multimedia. I trusted that healthcare professionals would take care of my dad well because of this lack of knowledge, as I felt they would know better than I. However, knowing and caring are two different qualities, although we, as patients and caregivers, would probably want both in all healthcare interactions.
Mistake #3, I did not ask enough questions or demand the right treatments as a caregiver for the patient I was caring for.
While he was getting his chemotherapy, he lost more weight. The surgery option was not available anymore as he progressed through rounds of chemotherapy and radiation because he lost too much weight from side effects and the disease itself, making him unable to eat even more. It became too dangerous to operate on, the surgeon told us; the surgeon urged my dad to try to eat so he could operate on him. At this point, I was perplexed. My dad thought similar prognoses of both options initially, and now the surgeon told my dad he wanted dad to eat more for the operation. Did I miss something? I had a strong urge to ask more questions about this comment, but I didn’t. The reprimanding tone of the surgeon’s voice did not make the interaction all that friendly. A combination of mistakes #1 and #2 was in the mix of my feelings.
So what can you learn from my mistakes and do things differently as a patient or a caregiver?
Tip #1, make sure to bring someone with you so healthcare professionals can understand you and your situation, and you and the accompanied can understand the conversation’s content.
You are often overwhelmed when you have to make crucial medical decisions, and you may not hear words accurately or misinterpret the conversation's content. Having another person who can listen to the conversation and even take notes can be very helpful when you have to “debrief” after the appointment. If English is not the patient's first language, more the reason, someone else has to be there to speak up for the patient to get help if needed. Prepare a list of questions together with the person you will be going with, so you can be ready when the doctor comes in.
Tip #2, listen to your gut feelings and keep records for everything.
Although this may seem like telling you to mistrust healthcare, it is more often the reality than I like to say. I did not realize this until too late. And did you know hospitals don’t keep your records after a certain amount of years? I could not retrieve my dad’s records because they were after the past nine years that the hospital would keep them. Healthcare systems are businesses, and you have the right to access your records just like you will get receipts after transactions in any business. You may need these records later in your life. You know your feelings and symptoms more than anyone else by default. Misdiagnosis is quite common and ask many more open-ended questions (starts with what, how, why…cannot be answered with yes or no)than close-ended questions (starts with is, do…can be answered with yes or no).
Tip #3, pull empathy from healthcare professionals by asking, “What would you do if you were me?”
The surgeon with who my dad interacted clearly did not understand what it was like to be the patient or have willingness to ask and listen. Later, I found out that eating was not something he could force himself to increase his weight as the surgeon was reprimanding my dad for not trying. I even demanded the same from my dad, the biggest mistake in hindsight.
Empathy is more than necessary in healthcare interactions but is often not just granted to patients. You need to demand and speak up for it with the short amount of time assigned to you for the appointment (in a courteous way, of course).
You may ask, wouldn’t he/she already think about this as me? Not necessarily, would be my answer. Pressures to make medical judgments in a short amount of time for healthcare professionals are demanding, and he/she may not have had the time to think through. The breath of time is necessary for empathy to occur and is often not granted for healthcare professionals. You, as a patient or a caregiver, may have to force that into the interaction. Some may resist doing that as they may see it as a liability, and you may have to clearly express your honest intention on why you are asking this question.
In summary, have someone with you, keep records for everything, and ask what the healthcare professional would do in your situation when you have to make critical medical decisions as a patient or a caregiver.
Not only will these tips help the process of making medical decisions easier, but they will also help you to have no regrets in hindsight, to say the least.