Here’s a pretty common scenario that came up while I worked in the hospital. An elderly patient in her late 70’s, let’s say her name is Shelby, comes into the hospital with a fever, lower abdominal pain, and confusion. One of her kids, Denise, found her on the floor of her living room at home and called an ambulance. When Shelby gets to the hospital, the ER nurse asks her daughter if her mom takes any medications, has any medication allergies, and if she has any medical conditions they should know about, and who is her primary care provider? Denise doesn’t know what medications her mom is on, but she does know she has a history of diabetes and high blood pressure, so she’s probably on something for those. Thankfully, after rifling through mom’s purse, they’re able to find a business card for her primary care provider (PCP).
Additionally, the nurse asks if her mother has a power of attorney (POA) and if she knows what her code status is. Denise, who has no idea, starts to get visibly upset at the mention of a code status because of course her mother should have all possible life saving measures taken, including CPR and ventilation. Also, Shelby’s husband passed away a few years ago, so Denise and her and two siblings would act as POA.
The ER physician takes a few labs and a urine sample from Shelby, suspecting a urinary tract infection (UTI). This patient is moved to a general medical floor to receive IV antibiotics. They haven’t been able to get in touch with the PCP and it’s been some hours, so they start her on some IV antibiotics, and Shelby immediately breaks out in a massive rash. It turns out she’s allergic. Her blood sugars are also elevated since she hasn’t been able to take her medications, and the nurse on her floor hunts down her pharmacy information in order to figure out what Shelby’s been prescribed. It turns out she has two different pharmacies, which the nurse only figured out because she had to call a different family member who sometimes picks up prescriptions for her, which means Shelby has not only been off of her blood sugar medications for possibly longer than a full day, she hasn’t taken her daily blood pressure medication either.
Now, we need to break this down because a lot has happened here. Shelby has a possible infection and confusion, possibly from the infection. No one is aware of her medical history: medications, diagnoses, allergies, code status, POA, or pharmacies. Also, does she have any specialists she sees for the medical conditions she does have? There are a lot of unanswered questions, and since Shelby is unable to answer any questions with clarity right now, it takes several hours of phone calls, waiting for call-backs, and investigation on the staff’s part in order to get Shelby the care she needs.
I currently live in the same home as my parents, and I have discovered over the course of the last few years that we need to be having active conversations about their medical needs and information. Both my parents are in their 60’s. They are healthy at the moment, but they do have conditions that need to be followed-up on regularly. We’ve had awkward conversations about finding primary care providers and where to find medical care. And, since English is not their first language, I have had to accompany them to medical appointments and act as translator even for what I thought of as simple things, like getting a shot at a local Walgreens.
In this blog entry, I’m going to try not to go into too much detail about things like code status, which can be a very intimidating topic. Instead, I want to go over a practical way to avoid some of the difficulties that our pretend patient Shelby had to go through, which is making a medical information binder or journal for your household.
Everyone has a different style or system depending on the needs of the family. I’m fortunate enough that no one in my immediate family has a medical condition that needs to be seen to every week or few weeks, but there are families with adults or children who require almost ‘round the clock care, including things like home health, palliative care, and regular appointments with specialists.
I recently made a very simple journal style layout for my family, since I’m a bullet journal fan (if you don’t know what that is, just google “bullet journal” and you’ll see what I mean.) The journal is meant to be something I can take with me to any of my family’s medical appointments and has a list of the major points that any provider should know. There’s a great number of blank pages for me to just write down notes during an appointment, and I’ll have an index to reference for anything that seemed particularly important. However, I am also working on a more indepth binder for things like visit notes and lab results. I’ve even seen some people put in a section for medical bills that they are working through. Regardless, journal or binder or even digital format, here are some major things to keep in your records that should be easily available and that all members of your family who are able to understand such things should be aware of, or at least know where to find it.
Emergency contacts and how to contact them
It’s easy to take for granted who your emergency contacts should be, but make sure you talk to whomever you would like to be contacted for an emergency. It doesn’t have to be a long conversation, just a quick, ‘FYI, in case I have a medical emergency, I put you down as someone who could be contacted for information.’ For our family, both my husband and I are each other’s emergency contacts, but we also have the grandparents on the list, in case neither of us are able to be contacted.
Allergies
This includes food allergies. My husband is allergic to pine nuts and I’m allergic to enoki mushrooms (weird ones, I know, but they popped up at some point!). I know plenty of patients and people with allergies to nuts, milk products, soy, etc. If you’re ever hospitalized, these are good to know for dietary purposes.
Included here, too, are any allergies to latex and other compounds. Latex is relatively rare in today’s medical facilities, but some offices still do purchase latex-based medical equipment.
And of course, make sure to list out any medication allergies and your reactions to them. It also helps to list medications that you’re not necessarily allergic to but might have had a bad reaction to. For example, some of my patients have taken certain pain medications that led to things like extreme sleepiness or even hallucinations. That’s always good for a medical team to know.
Doctors and care providers
Make sure to list your primary care providers, specialists, and mental health professionals, as well as their contact information.
Pharmacy information
This not only helps with any prescriptions that might need to be sent after any emergency, this also helps the care team find out what your prescription medications are. Make sure to list the name, address, and phone numbers of your pharmacies.
Diagnoses and medical history
Think medical diagnoses, surgical history, and hospitalizations. I also want to stress mental health diagnoses as well. These are all necessary pieces of information in order for your care team to take all of your wellness into account.
Medications
Make sure to list the name of your medication, the dosage, and frequency. If you take specific medications at specific times, make sure to list these as well.
Family history
Is there any history of high blood pressure, cancer, high cholesterol, or any other medical diagnoses in your family? Sometimes, with all of the information taken together, your care providers might suggest followups or even genetic testing/counseling to see what the risk factors are for you or your family in future.
Recent immunizations
Have you had your flu shot or covid shot? Tdap? Any other significant recent immunizations? These might be offered to you during a hospitalization, and I know plenty of patients who just forgot whether or not they’ve had recent immunizations.
Code Status
I have another blog entry that goes into having conversations with loved ones about code status, but even if you haven’t filled out specific documents yet, you might want to write this out for yourself, as well as discuss this with someone close to you, in case you are unable to answer for yourself. For my husband and I, who are in our 30’s and are relatively healthy, we have discussed with each other that we would consider each other to be Full Code, which means we both want CPR, ventilation, and other life saving measures to be performed. However, what happens if you’re in your 70’s but still relatively healthy? CPR can crush bones, ventilators increase the risk for pneumonia. Make sure to have a discussion with someone you trust about what you want done to you if any medical emergencies should arise.
(see my entry https://yourchurchnurse.org/the-end-of-a-life/ for some resources on how to have this conversation, and what some of the major terms mean).
Have a Conversation
As essential as it is to have this information written down or digitized and easily accessible, it is more important to have a conversation with the important people in your life about where this information is and how to use it. Where do you keep your journal/binder? Or, if you’ve decided on a digital format, have you shared it with your emergency medical contact, and do they know how to find it? For our family, we might do an electronic one as well, but having something written down is more practical for some of our emergency contacts.
Pulling all of the information together might take some work, but once it’s organized, it will make any medical emergency so much easier to deal with, as all of the details will be easier to figure out and coordinate.
Lastly, I want to give an example in my own life of how pulling together all of the information and having these kinds of conversations was a boon for our family.
A few years ago, my late grandfather was diagnosed with cancer in his liver. Although we didn’t put together a journal or a binder per-se for him, between my family and I, we were able to pull together all of his relevant medical information, and my uncle, his POA, and I were able to coordinate his care more effectively. This meant clearly communicating what he could or should not take for things like pain, GI upset, and blood pressure. I kept in communication with his primary care provider, palliative care, oncology team, and, at the end, his hospice to make sure he had clearly delineated care. It just took having 1 or 2 people willing to have thorough, and sometimes awkward, conversations in order to make sure everything came together.
Here’s what happens when all of that chaos gets organized and all members of the family get on the same page; there is room for peace. My most precious memories of those last few months of my grandfather’s life were of our aunts, uncles, and cousins getting together, sitting around his living room, and listening to everyone share stories and sing hymns together (my grandfather loved hymns.) There was very little scrambling through emergencies. His medications were very clearly communicated to him and my uncle. His pain was taken care of. And he could just enjoy being with his family. Every visit to the doctor and hospital were less stressful.
Now, there will always be a case where everything was done right, but things were still chaos through no fault of the patient, family, or friends. But having some of the basic things taken care of from the get-go can help prevent some of the more easily preventable medical errors and confusions that can come up, especially during some of the most vulnerable moments of our lives.
If you have any examples or stories of how having a medical binder/journal or record on hand has helped you or your family? Or, do you have anything else to include that might be helpful for anyone who might be working on pulling this all information together? I would love to hear from you! Leave a comment or story down below!