One of the many things I learned when going through a health crisis (from Sophia’s seizures, to my dad’s bypass, to my own diagnosis) and one of the things I continue to echo whenever anyone tells me she/he or a loved one is sick – never go through any of it alone without an advocate. Here are some examples as to why…
SOPHIA’s SEIZURES – when the patient doesn’t have a voice
I learned it the hard way. Sophia was just two when she had her first round of seizures. As a parent, to sit there and see your child convulse, stop breathing, and then lie limp… well, it’s jarring to say the least. But then to have a clear head to make decisions and speak on behalf of your child is something they don’t train you for in any of the Dr. Spock books. After having 3 grand mal seizures in 4 hours, cat scan and blood work coming back negative and no sign of fever, the next scariest event is looking up at a half dozen medical professionals with dumb-founded faces, not knowing what on earth as to what to do next. A night in the pediatric neurology unit with an EKG (30 wires attached to her head), in a prison-like crib, little Sophia woke the next morning with the specialist saying there was no sign of epilepsy, that she was fine and was ready to discharge her. But I knew better. I showed the doctor how she couldn’t grab anything out of my hand, how she couldn’t sit up on her own. Turned out having 3 grand mal seizures in 4 hours for a two year old makes one lose all motor skills. She had to learn how to stand up, walk, hold my hand, all over again. We spent another two nights in the unit. Feeling extremely helpless, I demanded that they allow her twin sister private time with Sophia in the playroom, in order to jumpstart her system. And it worked! You could see Sophia’s frustration with not being able to do the simplest tasks she watched Penelope perform with ease. The next morning I took her off of the EKG, we got onto the floor together, and watched as she then limply walked and jumped into my arms. No doctors could have done or seen any of this. Only an advocate. We left that afternoon, to get life back to normal at home. (She was later diagnosed with having ‘complex’ febrile seizures – had another round of seizures, less physical, later when she was 4 and was able to verbalize what was happening, but has since grown out of them.)
WHERE ARE MY MEDS? – when the patient doesn’t make the mistake
Ok, here’s my situation – I’ve been diagnosed with stage 3b Breast Cancer. I’ve had a double mastectomy. I’ve chosen my form of treatment – 4.5 months of chemo, 6 weeks straight of radiation. I’ve been ‘stuck in my head’ for months and the first day of infusion arrives. I’m to get the harshest form of chemo out there, one of the three nicknamed ‘the red devil.’ I’m sitting on the table ready to talk to my oncologist before getting started. She’s casually asks, “So, did you take your steroids?” Steroids? What steroids? “Um, no, you didn’t give me any steroids,” I reply hesitantly. She states firmly, “Yes, it was one of the prescriptions I gave you last week. You can’t start chemo without it.” Maybe she did give me a steroids prescription. But I filled the other two, why wouldn’t I have filled that one? How could I have done this? What do I do? In an instant, a voice leaning against the wall says, “You didn’t give her a prescription for steroids. You gave her the two for anti-nausea, but nothing that involved steroids.” This is Graham, my husband and personal advocate. He’s been with me at nearly every doctor visit, and apparently he was at the one in which my oncologist forgot to give me a required prescription of steroids. The embarrassed look on the oncologist’s face is forever stamped in my memory. Now, I know what you’re thinking. How could she forget something like this? Something that was required in order to take my chemo? The very reason I’m there and the whole purpose of her job. Yes, it sucks. But, c’mon. She’s human. Everyone makes mistakes. Grant it, when doctors make them, the effects are much more drastic. But I like my oncologist. I do. And maybe the day she gave me the scrips, she was ‘off her game,’ or her two year old had a sleepless night. I don’t know. On the other hand, I knew, thanks to my advocate, that it wasn’t me that made the mistake. So, I armed myself with the confidence to say, “I can’t leave here today without starting chemo. I’ve worked myself up too much to just walk out and start all over. I’ve set aside all day for this. I’ve got nothing else to do. So figure out what needs to happen and let’s take it from there.” She looked at me, acknowledged my command, left and came back ten minutes later with a plan. My infusion that day took nine hours instead of five, but I did it. Now the world wouldn’t have ended if I didn’t start right then and there. But it was the first time I was on the patient side of advocacy, and felt extremely grateful that someone was a voice for me, keeping track of something I couldn’t. Because frankly, it’s hard enough to be living with the disease, disorder, whatever. But to have to keep each and every part of the equation straight in your head, it’s overwhelming to say the least. That’s why you need an advocate.
THIS ISN’T WORKING – when the doctor doesn’t listen
“I’m throwing up a lot.” “The neuropathy was bad.” “It’s difficult to eat.” These are things that a dear friend tells her doc. (She wishes to remain anonymous, so let’s just call her George.) George is a single woman living in New York diagnosed with a stage3 cancer, and has a shitload of friends and family who love her, including myself. Her body is already sensitive to light and smells, and she suffers from severe migraines. All of this told to the oncologist, who repeats several times that this form of chemo is easy, and normal people don’t suffer severe side effects. “She’ll be fine,” she continues to repeat several times. Again, we remind her that George’s body isn’t normal, but she continues to reassure us that all will be ok. Chemo#1 comes around – blisters form on the bottom of her feet, the neuropathy is slightly debilitating, but the nausea is what sends her to the ER. After telling her doctor the effects of the first session, Chemo#2 goes much smoother, some side effects continue but there is no nausea, and George sleeps it off for three days. However, three weeks later Chemo#3 hits like a load of bricks. George starts feeling the side effects while still getting the infusion. She can barely walk out of the doctor’s office. She talks as if she’s drunk, with slurred speech. You can see the muscles pulsing on her calves. And the nausea…oh, the nausea. I start taking time codes of the sequences, to ensure that it starts to be less frequent and that she stays hydrated. (This is when being the caregiver truly sucks.) After 12 hours of hugging porcelain, George is able to keep liquids and some solids down. We make a decision to call the doctor together Monday morning on speakerphone. George says how the side effects were bad and how she was throwing up a lot, and that she’s hesitant on getting a port installed. It’s as if the doctor doesn’t her anything she says. I immediately interject. I talk in detail about the instant neuropathy while she was still sitting in the chair, the difficulty walking and talking. (Note: MOST side effects take a couple of days to settle in.) Also, that George wasn’t just throwing up ‘a lot,’ but I gave the exact details – started at 5pm about every half hour and then between 1am-5am was about every 15-20 minutes until it subsided. And how it wasn’t until 11am the next morning that she was able to start drinking fluids. And then truly talked through George’s fear of getting a port installed. The doctor immediately changed course – the port won’t be installed, and for the 4th treatment she won’t do an infusion just the pills. George’s energy immediately lifted (which goes to show how much of a mind game it all is). “I didn’t even realize that was an option,” she whispered to me. We then make an appointment to talk in person in another week. I turn to George, and tell her, in case she didn’t know, “There are people who have a worse diagnosis than you and opt for no chemo treatment & do just fine. Also chemo isn’t a cure. It’s an insurance precaution for the doctors to say that they did everything they could.” Now, when the doctor appointment came around George didn’t want to me bother going since her dad was in town, but I insisted that she have a consistent voice. Besides repeating everything above, we reminded the doctor that George wasn’t a ‘normal’ patient, that she shouldn’t be treating her as a ‘normal’ patient but instead should be treating the individual. (Yes, it’s sad that you have to say this to medical professionals.) But the real kicker? When I asked the doctor to look at the detail treatment of each of the first three infusion sessions, to figure out why the second was so much easier than the first and then the third? Come to find out, George got an intense anti-nausea drip (the top one, the one that cost me $350 in co-pay) during the second infusion, but not in the third. Somehow there was miscommunication between the doctor and the nurse tech and it was omitted. Again, human error. But again, the patient suffers.
HOW TO BE A PATIENT ADVOCATE. Below are my top 5 ways that you can best serve as a patient advocate:
1. LISTEN TO THE PATIENT: It’s her/his body and her/his choice. While you may not agree with what she wants to do, you as the advocate are there to listen and then help her make it happen. But also, to listen to how she feels (physically and mentally), and then interpret that to the medical team so that they have a clear understanding of what is actually going on.
2. LISTEN TO THE ENTIRE MEDICAL TEAM: Not just the doctors. The nurses and techs are just as informative, and sometimes can think outside the box more than the doctors who get paid twice as much.
3. WRITE DOWN EVERYTHING: You may forget things as well. Having everything written down as back-up is the best way to keep track, have reminders, hand off to another advocate, have everything in one place. I can’t count the times I’ve gone back to my notes, for myself and others. However this doesn’t just mean things said at doctor’s appointments, but also time codes of side effects, diet, medicine intake and more. This is the patient’s Bible and to be taken seriously. Also, a timeline of all events aids in working with the insurance companies.
4. BE THE VOICE FOR THE PATIENT: I don’t know why I’ve experienced doctors bypassing what the patient says and listening intently to what the third party says, even if it’s the exact same thing. Ask any and all questions, even though you may think them silly or inappropriate, and be persistent. But most importantly, you’ll find that you are the prime line of communication between each and every specialist and medical personnel. You are the one that relays info to the nurse, tech, specialist, because even though he/she may have passed the doctor in the hallway, they could very well have left one detail out, which could be the most important at the time to the patient.
5. GET A COPY OF EVERYTHING: The patient has the right to have all copies of scans, reports, and tests. And the patient should be able to talk through the scans, reports and tests with the doctor directly. This is also important for insurance reasons, and, if needed, when you need a second opinion. Having everything on hand and readily available makes life easier. And, as you can imagine, in a health crisis, one needs things to be made as easy as possible.