16 Feb Asking Until YOU Feel Answered
As a patient advocate and a full-time caregiver for my parents, I try to participate in as many conversations among others who are in my situation as I can. It helps me feel less isolated; learn tips from those who have faced an issue before me; gives me a sense of perspective on my troubles; and, sometimes, even lets me vent or laugh in an understanding environment with a sympathetic (and empathetic) audience. While many of the conversations happen in person (or in the pandemic version of “in person,” distanced or on Zoom), most of these interactions happen on social media, such as in Facebook groups for people with the same diagnosis or who take care of someone with that diagnosis.
In these virtual groups I often hear survivors and caregivers seeking help and pointers from each other, because they do not feel “answered” by their medical teams. They have usually had a recent appointment and either have an immediate follow-up question that they were unable to ask, or they have had a chance to “sleep on” the information learned in the appointment and they have new questions.
But I will share the same thing with you, that I share with all of them: you have the right to feel answered.
As important as these online forums are, they cannot serve as a substitute for medical advice. There are many supportive reasons for people united by a diagnosis to be in regular communication with each other, but unlicensed medical “advice” is not one of them. Meanwhile, the impulse to ask these types of questions amongst people facing the same condition is completely understandable: it is easier than asking the medical team. Conversations amongst friends and acquaintances are not limited to business hours, and are drastically less intimidating than communicating with a healthcare provider.
So: what can we do to “feel answered?”
If you don’t have time to ask all the questions you would like to ask in an appointment, or if you think of questions right after the appointment is over, call the office and ask your questions, or call to say you have more questions and would like another appointment. If you think of questions hours or days or weeks (etc. etc.) after your appointment, do the same: call back. If you, like my parents, have difficulty physically going to an appointment, you can ask for a phone or Zoom appointment (sometimes they will be called something else, like a “telehealth” or “virtual” appointment). These kinds of appointments can have the huge benefit of making you feel more at ease in your surroundings, since you can chat with your healthcare provider in the comfort of your own home and not in their office. You may also be able to email your questions to your health care team or post them in your online patient portal if that is something you have access to.
If technology is not easy for you to navigate, you still have the right to have your questions answered at your own pace and on your own terms. The important thing is to not feel as though your questions are less important just because others have an easier time asking theirs. Call when you can, and ask as many or as few questions as you need to, at one time. Usually, these will be taken down by the front desk staff and will be referred to a nurse or other provider who will call you back. Often, the nurse can answer the questions. Also, the nurse can usually refer the questions to a doctor, physician’s assistant, nurse practitioner, or other provider within that office.
You may have a friend or a family member who is willing to help you organize your questions, make phone calls, or serve as tech support for a virtual appointment. Chances are, at least some of your friends or family would love to be given a concrete and practical way they could be of service to you. (Just be thoughtful about who you would want to have access to your personal information). You may need to have a friend or family member who is helping you make appointments or ask questions sign a HIPAA form, which gives your health care team permission to share information with them.
While much of this may seem obvious, it can be easy to forget the simple fact that you deserve to feel answered. It is human nature to not want to be rude. We do not want to create waves. We do not want to add to someone’s day .. In my sixth year as a full-time caregiver, I have had these conversations enough to know that people simply feel uncomfortable “bothering” or “bugging” their medical team with every question they think of, especially when we know that healthcare workers are extraordinarily busy.
It is important to realize that medical appointments can be brief and it is completely acceptable and very common for there to be more questions than can be answered in one meeting. Look at it this way: if this were work or school, and you had received instructions on a project during one brief meeting but you had follow-up questions, would you continue to labor away while knowing that more answers would let you do a better job? Or would you ask your questions to be sure you had all the information you needed and wanted?
So, I am reminding you now: you have every right to contact your health care team and ask your questions. You are not being rude. They are there to help you. It is reasonable to expect that if you are polite, patient, and understanding when you contact them, that you should get answers to your questions.
(As always, know that calling 911 is the best way to handle a medical emergency).
Triage Cancer can help you learn more through our free resources on health insurance, disclosure, caregiving, and navigating medical care.
Danielle Pardue is the Legal Fellow for Triage Cancer and a patient advocate. She is the primary caregiver for her mom, who has Stage IV lung cancer, and her dad, who has several chronic illnesses. Learn more here.
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