We’ve had good health in our house for the past several months. I don’t mean that no one has caught a cold, but rather that Drew hasn’t gotten sick.
First, a little background: For the first 5 years of his life, we found ourselves in the hospital 2-3 times a year every year. He would get regular lung infections that would present themselves with symptoms – an increased cough, a decreased appetite, a loss of energy - and we would need IV medication to bring him back to his baseline. We would be admitted to the hospital, have a PICC line placed, and after a day or two return home to run IV medications around the clock for the next two weeks. We could have stayed in the hospital for the duration of the treatment, but with other kids at home and jobs and just general life responsibilities, doing the therapy at home always felt like our better option.
A few weeks ago, a symptomless Drew went to the doctor for a routine checkup where we noticed a decrease in his lung function (FEV1). After talking with his doctor, we tried an oral antibiotic but the numbers didn’t improve. We treated him with a steroid, thinking that perhaps there was an asthma or allergy culprit, but the numbers still didn’t improve. With few options remaining and lung function still on the decline, we were faced with the decision to start him on IV medications. This was a hard decision for my husband and I to make, as in the past we have always had symptoms to accompany the decision. There have been no symptoms. He has no cough. His appetite and weight are better than they have ever been. There is no problem with his energy level, yet we are about to put him through the procedure of getting a PICC and pump high doses of antibiotics into his veins for two weeks to try to get this number to improve.
Drew is only 6, so he hasn’t been doing pulmonary function tests (PFTs) for long, which means we haven’t had this number in the past to help us assess his health. I’m a big self-tracker, and I can tell you with high reliability when he is about to come down with something, and the best treatment option for him based on those symptoms. But this time I was blind. None of my data supported what would be considered an exacerbation in need of treatment, so I had to defer to the doctor. She suggested a two-week course of IV antibiotics.
Throughout this highly stressful month, we used shared decision making numerous times to determine the right path, at each step along the way. We could have started with IV medication, but our priority was to have a family vacation, so we decided to try the oral antibiotic, instead--something that could easily be brought along on our trip. When that course of treatment had no change in his FEV1, his doctor asked what we wanted to do next. She knew that we had another vacation coming up and she also knew that we would probably prefer to exhaust our other options before jumping to IV medications, so we tried the steroid. We worked with our nurse to schedule follow up visits to retest lung function according to our schedule: they understood my concerns with infection control and I understood their schedules and availability. When it came time to make the decision about IV meds, I wanted to know what medications his lung bacteria was most susceptible to, and what the side effects of those medications were. I referenced older data that I had to determine the effect of different medication combinations on improving his symptoms or exacerbating side effects. I wanted to know how many times a day we would have to do infusions at home, as some medications are every 12 hours and others every 8 or 6. What I was really trying to do was optimize the effect of the treatment while minimizing the disruption in our life.
That balance between patient needs and physician-directed care is the value of shared decision making. Clinical research has a tremendous opportunity to use shared decision making tools to improve recruitment, sustain participation, and develop therapies that not only treat a disease, but that treat the whole person. Offering families a clear guide to the differences and similarities between options, including the goals and preferences of the family and the risks and benefits from the clinical perspective, can improve their confidence in making these decisions, allowing them to choose what’s best for their individual needs.
There is added opportunity in shared decision making that could have a lasting impact on how people engage in clinical research:
- Strong care partnerships with mutual trust, collaboration, & empathy
- Enhanced co-production among and across all stakeholders
- Easy access to peer-to-peer support and information - relevant research
- Enhanced agency, skills, technology, & tools to improve individual health
- Proactive support for life and developmental transitions
We finished our IV medications, had a few new tests, and are finally on the road to recovery. The shared decision making that I am able to do with my son and his care team definitely helped us to make these hard decisions a little easier. Knowing that they understand and respect our preference in minimizing the disruption of this disease in our life, and having confidence that I understand the risks and benefits from their clinical perspective to effectively treat him to restore his lost lung function has built trust between us and allows us to personalize treatment solutions to meet his unique needs.