SOHPM_July_2017 IN THIS ISSUE
From the Chair: Crawling Out from Under the Bus
Pediatricians Advocate: To Protect Children’s Health Care Coverage
Fellow Column: Life is What Happens When You’ve Got Other Plans
Parent Column: Care at the Opposite Ends of Life
Pressure and Time: A Recipe for Change
By Carla Steckman– New York
Pediatric palliative care doctors and obstetricians operate at different ends of the same spectrum. As a parent who has experience with both sets of providers – those ushering a life into the world and those guiding one out – I find many similarities.
My third child, Talia, is twenty-two months old and I am watching her die slowly from Tay Sachs disease. My husband and I engaged palliative care immediately upon diagnosis. Now, an unknown number of months before Talia’s death, I have the space to reflect on how both types of doctors provided me with a similar set of tools to prepare my family and me for the unknown.
My earliest appointments with my OB were fraught with anxiety. I had a new being inside me and I questioned every decision regarding my body and lifestyle. I felt that it was essential for me to build a relationship with my doctor so I could entrust him with my child’s safe passage into the world.
I felt both powerful and incredibly powerless as my doctor provided me with the first views of this tiny free floating embryo and I marveled at the magic of life. I noticed how the doctors spoke in measured tones when counseling me about test results. I listened carefully about how to best care for myself, and by extension, for my unborn baby. Healthy mother, healthy baby, I was frequently told. I left each appointment feeling empowered by the new information. After Talia was born, as we hunted for the causes of to why she missed milestones and had abnormal reflexes, I prepared for life with a severely disabled child. The absolute powerlessness I felt was almost unbearable when she was diagnosed with Tay Sachs, meaning inevitable death. My husband and I immediately engaged palliative care and that feeling dissipated somewhat after our first meeting.
I feared that the entire discussion would be focused on Talia’s death. Instead I found a doctor who spoke of Talia’s life and how to ensure it would be free from pain. I learned about the importance of stepping back and creating a philosophy of care and how our decisions would be based around those core principles. We spoke of Talia’s daily existence and of what equipment we could choose to maintain her quality of life. Equally important we talked about which interventions we would NOT utilize be- cause it didn’t fit with our care plan. At our first appointment, I built a relationship with my doctor that left me feeling stronger and more in control than I had felt in months.
At the OB, the second trimester is marked by the 20 – week ultrasound. I approached these appointments with great excitement. The shock of being pregnant had faded and my fear of miscarriage had dissipated. My husband on the other hand knew that this ultrasound could potentially reveal significant deformities and refused to exhale until after it was accurately read.
Now, in the middle of Talia’s decline, the shock of diagnosis has worn off slightly and we watch sadly now as my child continues to grow, but not develop. I desperately wish there was a test that could show me month by month what Talia’s decline will be. The uncertainty about timing makes me long for the relative simplicity of a trimester timeline and inevitable due date. My appointments at this stage include advice on how to manage the open timeline and how to keep on living my life while knowing that Talia’s death could be weeks or years away. Our doctor helps prepare me mentally for how to survive the process of watching my child die. If I don’t take care of myself, I can’t properly care for Talia. Healthy mom, healthy baby – sort of.
At the end of pregnancy, the OB meetings were about our birth plan and the uncertainties around labor itself. I worried I wouldn’t know what a contraction felt like (ha!). I worried about pain and being pushed into a C-Section prematurely. While I was never one who obsessed over a natural versus epidural birth plan, I did spend the final trimester imagining every possible scenario and trying to mentally prepare for each. As much as many parents want a “natural birth” for their children, it’s the OB’s job to try to adhere to their wishes while still keeping the parents focused on the medical realities of delivering a child.
Now I find myself obsessively thinking about our death plan for Talia. I meet with the palliative care doctor to discuss in exacting detail the way I envision my child’s death. I worry I won’t know what the final decline will look like. I worry about man- aging Talia’s pain, and of my own aching pain. Our doctor runs through potential end of life scenarios with my husband and me as we plot our course through the impossibly choppy waters. I am fixated on helping Talia pass out of this world in a pain- free manner with as few interventions as possible. Yet I have to prepare myself for the fact that, much like Talia’s birth, there may be medical realities that I don’t anticipate and can’t control. I must remain flexible and allow myself to reassess as conditions warrant. As a result of our conversations, I feel empowered to advocate for my wishes for my child in the midst of a system designed to keep her alive regardless of diagnosis.
Families need to feel a sense of control, even when largely powerless. Discussions with good doctors – a form of gentle realism – at both the beginning and end of life, can give us that. Without my palliative care doctor, I wouldn’t have believed that the end of life could be as thoughtful and empowering as the beginning.