"Our healthcare system inadvertently, yet potently, discourages engagement. It ignores the fact that the patient is already the most engaged person in healthcare." "As physicians, we expect patients to bring test results to an appointment – because patient information is often not shared throughout our complex and fragmented systems. We expect patients to remember their entire health history, and repeat it ad nauseum as our unconnected systems fail to share. We ask them to recount the complex names of the all the drugs they are taking – and at what doses. And it’s not uncommon for these questions to be asked many times in a single hospitalization, during outpatient visits, and again each time a patient encounters a new caregiver. The reality is that patients have no choice but to be engaged. They are provided these details in an inefficient way that causes a lot of frustration, worry and fear on top of already stressful medical concerns." "We need to think less about the patient being more engaged, and focus on how we can simplify, encourage and automate engagement tools on behalf of the patient."
I'd like to share with you why I've been missing from this blog for the past ~6 weeks. It is because I have been stuck deep in the muck of this broken system that I rely on for more than I should.
A few weeks ago we had made a plan with Drews doctor to start IV antibiotics, not for an exacerbation, but for a changing baseline. I am able to quantify his cough frequency through self tracking, and I've noticed that over the past couple of months he has shifted from having no cough to having a slight cough. Our plan was to be aggressive and to get him back down to his baseline while he wasn't exacerbating. So we spent two weeks running IVs around the clock from home. I had to share the "emergency kit" with school and our babysitter, something that must be with Drew at all times and emphasizes the seriousness of having a PICC line. I had to organize syringes and medications and equipment. I had to program IV pumps and order medications and supplies. I had to remember the dosing schedule and a list of things to look for that would alert me to a problem. I had to do all of this in addition to the rest of the CF care - 3 hours a day of breathing treatments, dosing 30 pills at mealtimes through the day, mixing our M-W-F medication and remember to clean out his once again polyp-y nose - and parenting of my three other children.
Unfortunately the IVs didn't make a notable difference, and we were distracted from the issue at hand by an exacerbation that followed our two weeks. Drew was up all night coughing. I was now calling the nurse who calls the doctor who calls the nurse to tell me that she agrees with my assessment that we should start a steroid. I told them that I thought he should be seen, and they saw him. In the midst of this crisis, it was time to reorder our regular monthly meds. We had plans to go to Philadelphia for Thanksgiving and I would need this delivered before we were to go. I made the call 10 days prior to us leaving, yet 3 days before we were still without. I called back and they were waiting for new prescriptions, only no one had called to tell me that. I called the doctor and then I called back to the pharmacy when the new prescriptions were placed. They couldn't open the prescriptions when I had called and said that they would have the appropriate person call me back. They didn't. I called back the next day, the day before we were to leave, and I insisted that the medication be overnighted with morning delivery so that we would have it before we left. I had to figure out how to get everything that I needed in between breathing treatments and calls with my sons doctor about his declining health.
We decided together that we could make a trip to Philadelphia for Thanksgiving, and with a nebulizer plugged into our car outlet we made the 9hr trip. Thankfully Drew got better.
We returned home to a letter from our secondary insurance letting us know that they were dropping us because we exceeded the income guidelines. I have to wonder if they looked at the cost of CF care - medications alone adding up to around $90,000 a year (thats before insurance, not our out of pocket cost). And that is when he is well! That doesn't include hospitalizations and procedures and antibiotics - don't even get me started. Our secondary insurance covered the cost of anything related to CF that was not covered by our primary insurance. And now, they would be happy to accept my challenge if I can collect receipts and show them that we spent $14,000 on our families medical expenses over the past 12 months. The best part is that I have to HAND WRITE THEM on a chart they sent and attach copies my receipts. Because I have nothing else to do with my time....
This brings us to today. I've got the flu. I haven't left my bed since Friday night. My doctor prescribed Tamiflu and we decided with Drews doctor that he and the rest of the family should be on it prophylaxis. We spent $250 getting this medication for our entire family, which now sits on the counter in my kitchen looking like a black market pharmacy, each child with their own dosing schedule, not to mention my husband or myself. We have medicine syringes to clean and more times to remember. We have it written out on a whiteboard in our kitchen that use to contain our grocery list but was hijacked when health needs overtook life needs.
I read this great memoir last week called My Foreign Cities where the wife of a man with cystic fibrosis shared about her role in their life, and a comment she made about care giving really hit home: "My field was large and nebulous - I had no idea how to do most of the things in it, and all I could do was try anyway."
Trying anyway! That's what we are all doing and are doing the best that we can! We are the most engaged in our health and care, knowing more about stuff that we never wanted to know than we will ever want to know. We are not the problem in this healthcare system to be fixed! Amazon knows when I run out of coffee and it shows up at my door, but it takes 5 phone calls and a headache to get a prescription refilled, one that we have taken and will take for the forseeable future. I am the one tracking my sons health, knowing which protocols work for him and which do not. I am contributing to his health, and I am rewarded with more burden, as he remains unwell. I cannot even coordinate a visit to see two doctors at the same time, despite the fact that they work together, because of a billing system. It has nothing to do with their schedules, or more importantly mine.
This summer I participated in a project sponsored by the Agency for Healthcare Research and Quality. The report is out and it addresses some of these issues as they relate to data connectivity. I don't believe that technology is the answer, but I do think that it can help. To quote the acting Assistant Secretary for Health, Dr. Karen DeSalvo, "Data sharing is a critical piece of this equation. While we need infrastructure to capture and organize this data, we also need to ensure that individuals, health care professionals and community leaders can access and exchange this data, and use it to make decisions that improve health." Here's the report if you're interested in checking it out.
There has got to be a better way folks, and talking about "Patient Engagement" is not the answer. I want to see action. I hope that some of the recommendations put forth in that report will be taken seriously and help to start the change that this healthcare system, this country, and most importantly my family so desperately need.