My mother collapsed at the doctor’s office last week. She hit her head when she fell. And so started an unexpected journey into the perils of negotiating a health care system in the face of delirium and disorientation. The proverbial ‘they’ say things come in threes. This was the third time I’d had to advocate for my mom’s healthcare in the last year. It reminded me of my own maxim that ‘all of life is a negotiation’ and negotiating our health care is no exception. We typically hold our health care professionals in high regard and shy away from challenging their expert advice. While I share admiration for dedicated medical professionals, I’d suggest you never abdicate responsibility over your own healthcare and for those you love.
I first remember learning this lesson when my daughter (firstborn) was an infant. She was diagnosed with a serious heart defect at 2 months old. I had raised questions at her one- and two-month check-ups but was told I was paranoid – she would soon be President of the Baby Association (a clever reference to the fact that I represented trade unions). As a first-time mom, I’m not sure why I got a second opinion. Call it women’s intuition. Thank goodness I trusted it despite my doctor’s assurances. It turned out Jade was in heart failure. Within minutes of that second opinion, she was whisked away on oxygen as cardiologists argued about timing and strategy for complicated open-heart surgery. But that is only the beginning of that story.
We then embarked on a three-month post-surgery journey where everything that could go wrong seemed to. If 99% of the population reacted to a particular drug one way, Jade would be the 1% that went the other way. Every day posed a life or death fight. The first few times I timidly voiced concerns (I was no doctor after all), I was shut down, patronized, or ignored. But when it turned out I was right each time (yes, they had punctured her bowel with the NG tube despite loud protestations it was a physical impossibility, and yes, her fever spiked because she’d started teething not from meningitis, so those invasive tests were unnecessary after all) I knew I had to trust my instincts. The girl whose dad hadn’t taught her to box needed to become Muhammad Ali in this unfamiliar ring. I had to step up and negotiate for my baby girl the way I negotiated for my clients.
And when things were not improving after 2 months and the cardiologists said she needed surgery again, I fought sabre-tooth and nine-inch-nail against it. Even when they told me she wouldn’t survive and it would be on my head. (Not exactly compassionate bedside manner). But I stuck to my guns. Sure I was scared. Sure I second-guessed myself. And when I insisted, against their recommendation, we pull the ventilator to push her to breathe on her own again, I stood by her bedside willing her to suck in that critical lungful of air as the painful seconds ticked by. But I decided to trust my instincts because I was convinced she couldn’t survive another surgery. And within a week, after months of agonizing close calls, we had Jade out of intensive care and en route home.
I was a little less diligent about negotiating my own healthcare. After many skin cancer diagnoses, all basal cell (slow growing and low risk) I became complacent about the cavalier scheduling and practices of the dermatologists. They cancelled appointments, mixed up doctors, misdiagnosed, forgot to follow up with results … you get the idea. I accepted it in ways I wouldn’t if advocating for my children. Don’t we often put our own needs on the back burner as we care for everyone else in our lives? Since we get what we tolerate, I continued to get substandard care. But then I got diagnosed with melanoma. Not slow growing anymore and high risk by any standard. At first my old tolerances continued as they cancelled appointments and gave me the runaround. Until I thought about the consequences for my family if something happened to me. Suddenly, I wasn’t prepared to take what I’d been tolerating. My why became strong enough. I invoked my Momma Bear for the bear cub in me to self-advocate and negotiate my own health care.
Fast forward to today and the situation with my mom. When I finally got word she’d been rushed to the hospital, I arrived to find that she’d been over 24 hours in the emergency ward, lying on a cot by the nurses’ station (alarms ringing by her head, creating total disorientation) with a handcuffed felon beside her complete with an armed police escort. She hadn’t had a CT-scan, nor had one even been ordered (it seemed they forgot she’d presented with a head injury), and she hadn’t received any antibiotics for her lung infection. Needless to say, my Momma Bear reared her head, to protect my mom, who (as often happens in later years) was now my bear cub to defend.
I brought my A.R.E. F.I.T model to bear, trying to build rapport and trust, employing empathy by commiserating about the challenges that under-funding and under-staffing brought for nursing staff, and remaining flexible to potential options. Ultimately, however, I recognized that this was a situation that also called for me to trust my intuition and above all, to be assertive to ensure my outcomes for my mom were met.
I invite you to adopt the A.R.E. F.I.T. model in advocating for your health care (and for those you care about). This can show up in different ways depending on your situation. Here’s a quick checklist of things to consider in negotiating this process:
- Ask questions about anything and everything you think you ought to know;
- Insist on getting answers to those questions;
- Ensure the answers are in language that you understand – if not, keep asking until you get it – there’s no such thing as a stupid question when it comes to health;
- If the answers don’t seem correct, raise further questions;
- Trust your intuition;
- Try to educate yourself;
- Don’t be afraid to challenge the information you’re given, the recommended treatment program, the medication being prescribed, etc.;
- Go up the food chain if necessary;
- Build rapport, trust and empathy, but make sure to be assertive as necessary to meet your outcomes (this applies with support staff, nurses, doctors and specialists alike).
These simple tips can have a profound positive impact on your healthcare outcomes. So much of our lives is a negotiation. Negotiating your health care just may be the single most important bargaining you ever conduct. Without good health, much of the rest of what we negotiate about becomes moot.