Karen Golding Smith
Founder, Excitant Health
Loss of Control
My twins, Rachael and Jaclyn, were born far too early into a room filled with people in scrubs; one delivery team and two Neonatal Intensive Care Unit (NICU) teams. As each was born, she was assessed and rushed to the NICU. For all the highly trained professionals bustling about the room, however, this was a familiar day at work. They knew where things were and what they were for, they knew each other and their respective roles. They knew what each light and alarm meant and went about their work with great proficiency along with the gravity the situation required.
My experience was completely different. I was numb from the chest down as the layers of my incision were closed and hopeful and terrified thoughts took turns dominating my mind. You can imagine the lack of control I felt, the dependence on people I didn’t know, and the powerlessness to help my daughters.
There is a natural divide between the staff and patient experience that contributes to a sense of aloneness, even in the presence of great compassion. Unless those caring for me had been through a similar circumstance, they couldn’t possibly know what it was like to be a mom who couldn’t hold her fragile babies. They couldn’t feel the conflict of fear and hope, the questions of whether I could trust these strangers along with the knowledge that I had no choice but to do so.
As an occupational therapist my focus had always been on collaborating with my patients. Inviting them to describe their experience, to help me understand so that I could better help them. We would problem-solve together and assess our progress along the way, adjusting where needed, to stay on the path that worked for them specifically. I liked that human connection aspect of my job.
When I found myself in the precarious position of having a high-risk pregnancy, I quickly discovered that the only way I was going to have a collaborative experience or to gain any control was to initiate it myself. I wasn’t sure how, though, and along the way I missed some significant opportunities that I wouldn’t miss today. In retrospect I realize that was largely because I didn’t know what to look for. I didn’t realize how vigilant, inquisitive or bold I could, or should be. How much should I surrender to the greater knowledge of the physician or be unquestioning of the care of the RN? What rights did I have?
Jaclyn died the day after she was born. We were given the option of letting her fade away on life support or disconnecting everything and having her let go in our arms. I can still see her little face relax and feel her grip let go. A nurse bathed her, bundled her and took her away.
By the time Rachael died 4 1/2 months later from an infection contracted in the NICU, I had learned how to take the reins of both parent and advocate. I had asked to learn to give her baths rather than the night nursing staff, to adjust her oxygen according to her needs, to change her diaper, feed her, and to be present during shift change and rounds. I had requested that the noise level in the NICU be reduced and that staff not talk across her isolette about their weekend dates. I knew from my OT experience how important low stimulation environments are in fostering healing and requested that it be honored in the NICU.
The night my daughter went into respiratory failure and the staff called a code to bring her back, my final and most difficult moment of advocacy was to request they stop their desperate and hopeless efforts to save her in a second code in an hour and let her die in my arms. That was the loving choice and it was mine to make.
Contributing to the solution
We are conditioned in our society to surrender our autonomy when we cross the threshold of healthcare. By the same token, those who are charged with caring for us are conditioned to shoulder all the responsibility to get it right and when, in their mortal fallibility, they stumble, we point fingers and file suit, we ruin careers and sometimes lives.
Instead, what if patients, families and friends – our communities – choose to shoulder some of that responsibility? It’s time we shift from the role of passive patient to active, engaged, informed, participative partners. It’s our lives, our well-being, our health and at some point, our death that all the fuss is about anyway. It doesn’t make sense to sit as observers and critics of those who work tirelessly to help us and not do what we can to ensure our safe passage through the system and back home.
I’ve spoken in the health care arena about creating collaborative relationships with patients and families for decades, have coached many individuals to be their own advocates through difficult diagnoses and had more personal opportunities than I would have liked to hone my skills and knowledge since Rachael and Jaclyn made their short cameos in this world. The most important takeaway is this:
You don’t have to endure suffering or loss to gain the skills and knowledge to have a positive influence and a strong voice at the health care table.
In fact, it’s best to be prepared before you need it, just like everything else. You’re going camping? Gather all your gear and learn how to use it before you’re out in the wilderness. You want to get your license to drive a car? Take the class and practice first. Looking for a new job? Research the company you’re applying to, the job requirements and if it’s in another town, research the housing, the community, the climate. Be a scout: Be Prepared.
In our workshops we help people gain an understanding of why it’s important to have this under your belt before you need it and what the risks are of not taking on this active role. I’ve never spoken with anyone who didn’t have a story to share about themselves or someone they care about who could have, and maybe should have, had a better experience either at a clinic or in a hospital. Odds are that you have a story too. That’s your ‘why’. Your ‘why’ helps you have the courage to shift from passive to active, from passenger to driver, from subject to partner.
Sharing the responsibility
You might be reading this and wondering why it’s not good enough to simply rely on the ‘professionals’. They’re the ones who went to school for this stuff, right? They’re the ones getting paid to do the work, right? Yes, they did and yes, they are.
Yet they are human and fallible, and no amount of education or experience can provide that crystal ball that shows what your experience of your condition is. No amount of education or experience can guarantee perfect performance or catch every potential error before it occurs. Burnout among health care workers is rampant and there are many factors contributing to the growing shortage of all types of healthcare professionals, increasing the burden on an already stretched workforce.
Not only can you help, but you’re the one who might reap the most benefit. You hold the key to the right diagnosis without even knowing it. Maybe you’ll notice something that prevents you from getting an infection in the hospital or being given the wrong dose of a medication. If you’re prepared with knowledge, tools and a bit of courage, you help everyone to provide better, safer care.
And in the end, isn’t that the point?