by Margaret Grotti
When my infant son was diagnosed with a massive brain tumor, the world stopped. It is an experience that I imagine many readers of this magazine have in common, whether that moment came in a hospital consultation room or in the birth chamber. Though my son’s tumor was not cancerous, it was deep within his brain, woven around several cranial nerves.
Following the surgery that saved his life, he lost functions including his ability to swallow, his hearing in one ear, and the ability to fully move his facial muscles. He was trached, uses a ventilator when sleeping, has a G-tube, and requires many meds and procedures to protect him from the constant threat of aspiration.
When the news hit me in that moment, I was thinking and feeling only as a mother. But in the intervening two years—though the critical illness, rehabilitation and recovery periods, through various acute illnesses and setbacks—I have been able to call upon another skill set that I have developed in my professional life as a librarian. I work at a university where I teach research and information evaluation skills. These skills have helped me negotiate difficult conversations with doctors and educators, and in the long daily slog through nurses’ notes, insurance documents, and follow up appointments.
Here are some of those practices from my field, along with some experiences and lessons learned.
Practice 1: Formulate questions for research based on what you know and what you don’t know
How do you get a handle on what information you need to have when it comes to your child’s medical care, education, or services? In 2002, Secretary of State Donald Rumsfeld famously said,
There are known knowns. These are things we know that we know. There are known unknowns. That is to say, there are things that we know we don’t know. But there are also unknown unknowns. There are things we don’t know we don’t know.
This quote provides something like a checklist for thinking about where to begin. It can be helpful to sit down and think through what you do know, what you don’t know, and what elements are likely beyond anyone’s knowledge. I have found sketching a quick, visual representation of interconnected ideas to be a great way to identify questions that should be investigated. You can come back to your map over time, which can help you to recognize when initial reports or speculation may have been superseded by new information.
One strategy that can help you to identify appropriate areas of exploration is to ask for your doctors or educators what information they need to assess in order to make a decision about your child. This can help you to determine what you understand about the decision-making process, and what you need to learn more about in order to be a full participant in the discussion. For example, when a sleep study was recommended for my child, asking what criteria would be assessed during that study helped me to understand what data we should collect at home in order to provide the doctor with the best possible picture of our son’s current patterns.
Practice 2: Determine what you need to investigate
Your child is medically complex, possibly due to multiple diagnoses and treatments that combine to create a picture that is highly unique. I had a hard time fully understanding this at first; it was hard to resist looking up every word on my son’s chart and trying to research it (either through Google or in the medical literature or both).
For example, one of the first things that we knew was that my son’s tumor was being referred to as a “posterior fossa tumor.” In my panic for answers, and absent any medical background or context, I based my research on this term. I read numerous studies that indicated that these tumors were associated with poor outcomes. I became convinced that all hope was lost—but the problem was that I didn’t yet understand the scope of what I was researching. I hadn’t mastered the foundational vocabulary to know that “posterior fossa” indicates a location in the brain, and there are dozens of tumor types that could emerge there, from highly malignant to benign. By researching any type of tumor found in this region of the brain, my scope was far too broad for me to be able to draw any reasonable conclusions from what I found. I was swamping myself with irrelevant information—and getting needlessly panicked.
Practice 3: Deal with complex research by breaking complex questions into simple ones
Too much information can be paralyzing, as in the previous example. Limiting your scope is an important step, but it is also important to be able to zoom out, get a rough outline of the complex landscape of your child’s care, and slowly divide that picture into distinct pieces that can be examined one at a time.
As is true for any researcher, over time you will find that these separate areas of investigation become more intimately related; you learn to see the connections between them and the whole picture comes into focus as the individual components are better understood. Building your foundational knowledge by tackling the “simple” questions first is the key building block that will help you be an advocate for your child in years to come.
Practice 4: Get your information from different sources, based on need, circumstance, and question type
What does “research” really mean in this context? We get information from our doctors, from other parents, from therapists, and sometimes from friends who remind us that our kids are still just kids.
Research may include:
- Talking to parents whose children have the same diagnosis
- Getting practical advice from home care nurses
- Reading medical journals and policy briefs
- Talking to health care providers and educators
There may be cases when talking to other parents is wisest, as when exchanging strategies for managing home care, carrying heavy equipment, or negotiating transportation. In other cases, your child’s doctors and therapists may provide expertise that helps you understand data derived from testing.
If you find that you are relying on only one information source for many types of inquiry, ask yourself if that tool is still serving your purpose, or if it’s time to find other networks, service providers, or literature to consult.
Practice 5: Pay attention to the gaps or weaknesses in the information you rely upon
Being the ultimate decision maker for another person is a heavy burden to bear. Yet, I have found that keeping this responsibility in mind—and thinking about what questions my one-day teenager (or his future caregivers) may put to me about why I decided take a particular course of action—is a great way to make me think through my answer. It also helps me recognize when I’m making the decision without full knowledge of that decision’s implications, alternatives, or outcomes.
This has helped me to stop, recognize weaknesses in my understanding or gaps in my knowledge, and seek out those answers before choosing a course of action. I know I will make decisions that my son may not agree with one day, but I will at least be able to fully explain the rationale behind those decisions.
Assess the information that you rely upon for signs of bias. When my husband and I researched early education options for children with hearing loss, we were surprised by the diversity of educated opinion that exists about the “best” way to educate children who are hard of hearing. Ask doctors, parent information centers, social work professionals, or mentors for organizations or other sources of information that you can trust, and seek multiple perspectives if you find yourself reading very opinionated pieces as you seek out information.
If you are given information that is not accessible to you, either because it is not presented in a language you are fluent in, or if it is presented in a way that is confusing, this is a critical gap that you should try to remedy. If your social worker gives you a slick brochure that “will answer all of your questions,” but you do not grasp its content, then your information needs have not been met.
It is never a weakness to express that you do not understand the offered information—whether that information is given verbally, in writing or through some other means. I have found that multimedia presentations are often available through hospital networks, which may be easier to understand than information in other formats.
Practice 6: Organize information in meaningful ways
You are likely dealing with a crazy amount of documentation, physician’s orders, schedules, equipment inventories, insurance information, and so forth. Some medical service providers offer an online patient portal that can help track upcoming appointments, diagnoses, and past visits. These patient portals can be invaluable and it’s worth signing up.
I recommend that you adopt the practice of calendaring well in advance for your child’s medical appointments, and use a tool like Google Keep to maintain a running list of to-dos, questions for further exploration with each doctor, therapist, or specialist, and for maintaining that all-important medication list.
There will be many highly emotional meetings with doctors. When you are facing a meeting that will be emotionally stressful, consider asking a friend to attend and take notes for you, to help organize and capture the incoming information. I have also occasionally asked doctors’ permission to record the conversation so that I can sift through it later.
Practice 7: Synthesize ideas gathered from multiple sources
When several doctors are involved in making a plan of care for your child, it can be especially difficult to bring all those bits of information into a coherent whole. Each doctor will provide a perspective through the lens of his particular experiences and medical specialization.
Calling the whole team together is a powerful strategy. Listening as doctors share information amongst themselves and answer your questions as a group can help the process of understanding tremendously. Beyond team meetings, another strategy to aid in synthesis is to keep a journal or other running commentary that you can review to piece together what you have learned from different specialists over time.
Finally, reflection is key for synthesizing information and becoming an expert in your child’s care. Though it is difficult, carve out that space for yourself and contemplate the picture that is emerging. My own reflection time is my 20-minute commute. Reflection is essential for sanity both at the beginning, when you are experiencing the tumult of changed expectations and shifting identities that medical complexity brings to your life, and as time goes on and the picture changes.
Consider your roadmap—what has stayed the same, what has changed? How do your future explorations need to change based on the information that you have received so far?
Practice 8: Draw reasonable conclusions based on the information you have gathered
The key word here is “reasonable.” It can be terrifying to be responsible for a person who is vulnerable, and no parent can find the perfect answers all the time. Do the best you can to make reasonable conclusions by adding some of these practices to your repertoire, and take pride in knowing that you have actively engaged in the decision-making process surrounding your child’s care at every step of the way. Allow yourself to be at peace with that.