14 Sep Reflections from a Caregiver Advocate: Assume Nothing
As a medical advocate for yourself or a loved one, your plate is full; perhaps even more full than it may have been at other times in your life. Managing the logistics of intensive treatments and related appointments (and of all the resulting lifestyle changes) can be a full-time occupation. Because of this, prioritization becomes important, and you will find yourself trying to conserve effort wherever possible.
Unfortunately, there is one major “shortcut” temptation that seems sensible at first glance, but that, in my experience, should be avoided: assuming the medical team knows or remembers all the dozens of little details that make up the entire treatment picture.
Obviously, I do not mean to say that there is no institutional memory of the broader strokes of the treatment plan. Not at all. Far from it. However, there are many pieces of information that make up the comprehensive and practical aspects of any treatment regimen, and I have found that assuming the medical team will remember these details (or have them recorded correctly) is often a waste of time for the patient. Instead of wasting time by assuming the provider knows everything they need to know, it is usually better to be proactive and forthcoming with background information anytime a provider must begin a process (such as a prescription, referral, lab order, or equipment order). This is the case even when the provider claims they already have the information they need.
For example: there are only three durable medical equipment stores in my area. My mom’s pulmonologist, who naturally orders her oxygen supplies, is in a different city. His office has misfiled orders for her more than once: assuming we deal with the larger companies in our area rather than the smaller one we actually use, or assuming that we use a company in his city that is not available for our local use.
Similarly, there are a limited number of pharmacies in my area that contract with my dad’s prescription coverage provider. As a result, we use a mail-order pharmacy for prescriptions that are not acute. Most of his providers are in different cities than the one where we live. If I had a nickel for the number of times his acute prescriptions have been sent to the mail-order pharmacy, or that his long-term prescriptions have been sent to a non-local location of his retail pharmacy, I would have a healthy collection of nickels.
Another example comes to mind: both of my parents have had several periods of treatment supervised by home health care nurses. We use the same home health care company each time. Regardless, providers for both of my parents have sent orders to the incorrect agency.
One more: my own primary care provider and one of the specialists I see regularly disagree about whether one of them can order labs for the other. One thinks they can; the other thinks they cannot. Even though they use the same electronic charting software, they are housed within different hospital systems, and practice in different counties. There is no outpatient lab in my hometown that my specialist can send labs to electronically. I have to travel an hour to use the lab at my specialist’s office. I once tried to use hand-carried paper lab orders to a different lab in my hometown, thinking I had found a solution; only to discover, after calling back 48 hours later, that the paperwork was not scanned in correctly, causing the sample itself to be lost. With a lost sample and incorrectly filed orders, the lab didn’t even call me to report the mistake; I found out by asking.
There are other parts of your treatment experience that providers or their staff may forget or guess inaccurately, such as: your work schedule and how it shapes your appointment time preferences; conversations that you have had with different providers at that practice, or especially at different practices, even if you have already briefed a specific provider about those conversations; the names or contact information of your providers at other practices; the personal reasons you have chosen or refused certain treatments; the durable medical equipment suppliers that stock the particular item they need to order for you; the list could go on forever. (You will see that the advice not to assume goes both ways: patients/advocates should not assume that a situation is being handled without a problem, and providers should not assume that they always know all the necessary information).
Now, at this moment, you might be asking: shouldn’t all these issues be able to be resolved by checking a patient’s chart? Well: the name of mom’s oxygen supplier is in her chart; both of dad’s pharmacies are in his chart; and my lab preferences are in my chart. The names and contact info of all our providers are in the charts of all our other providers.
Documentation is not enough. It is only one piece of the puzzle. Charts often contain errors (more information on that here: https://triagecancer.org/QuickGuide-MedicalRecords). Charts may not be thoroughly checked before orders are entered or calls are made. The amount of time it takes to check a chart deeply enough to find an answer to a question simply may not be feasible. Health care providers are overworked, especially during a pandemic. There is no way that a provider or staff can memorize the needs of all their patients and recall them on demand. Medical office staff members are in the habit of filing things the way that they usually file them for a majority of patients, so different preferences or considerations for individual patients can easily be overlooked or forgotten.
The point is: mistakes will be made. The humans who make the health care system work are fallible, just like me and you and everyone else. Mistakes are excusable so long as they are caught and corrected in a reasonable amount of time.
This is where the work of an advocate comes in. When you are waiting for paperwork to be entered, lab results to come in, prescriptions to be sent in, or equipment to be ordered, rather than assuming the process is going smoothly, follow up and check in. Do NOT just sit and wait. Take the advice from my previous posts: call and ask. Ask until you feel answered. Investigate why there may be a delay. Be sure that the staff member or provider is aware of all pertinent facts when you ask about the time lag between updates. Ask politely but persistently. Such matters are urgent and deserve to be treated as such, so long as you are respectful of the time and workload of the person on the other end of the phone.
For example: I do not wait longer than two business days for a lab result. Any time a lab result has not been reported to us within 48 hours, I have called the provider’s office to ask about it, and without fail, there has been a problem with the order or the sample, and that problem has caused the delay. Asking politely on your own schedule is almost always better than waiting until the provider’s office staff has the chance to notify you, because labs tend to be ordered for a specific timeframe, and repeat lab draws should be done as soon as possible.
When waiting to hear from a surgeon’s office for an appointment for my dad, we called to ask why it had been a few weeks since the referring provider had submitted his request for my dad to be contacted by this specific surgeon. As it turns out, the referral letter had simply been mislaid off a fax machine. The referring provider assumed his part of the task was complete, and the surgeon’s office had no reason to call us because they had not seen the letter. There was no reason to notify us in a void, so nothing would have progressed without our phone call.
The takeaway is this: as exhausting as it is, nobody is in charge of the flowchart of a patient’s care more so than the patient. This is one of many reasons that it is so important for each patient to have an advocate. The first person you tell about the preferred pharmacy, the preferred appointment schedule, the past medical history, the specialists’ names, or any other information will not be the last. As an advocate for yourself or a loved one, it is realistic to expect that you will repeat this information hundreds of times. Unfortunately, this is one reason why advocacy can be a full-time job.
In an ideal world, all the pieces needed for a patient to get care would come together easily and quickly without the need for patient or caregiver homework. Appointments can already be stressful, and even though you might want to just go with the flow, that simply is not the safest course of action. “Assuming” is a luxury, and NOT being able to make assumptions is a burden. It is not fair that the patient and advocate bear this burden, but we do, so we must take pains to be prepared.
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.