4 Lessons from a Mother and Patient Advocate: Take heed, doctors, of how your actions impact others

Recently, I had the honor of meeting Catherine, a mother, caregiver, and patient advocate. Seven years ago, Catherine became pregnant with twins. In week 29, she was told that Twin B had died. Twin A was born two months later.

She was named Alexis (her twin, whose footprints her parents will always cherish, was Kaitlyn). Weighing just 4 pounds at birth, she was in the neonatal intensive care unit for months. Catherine and her husband were told numerous times that Alexis was going to die, but despite her long list of medical problems, “the list was overshadowed by her will to live.”

At just one year old, Alexis was diagnosed with no less than 15 serious medical conditions. Her medical records were taller than her, and the list was growing. Thankfully, Alexis was growing, too, into a remarkable young girl.  In fact, says Catherine, that was her biggest problem with Alexis’s medical care for so long. “I wish more doctors acknowledged the bright side.”

Catherine’s stories of how her doctors perceived and interacted with her child are sobering. At one point, a doctor walked into her room and told her family that Alexis had just one month to live and that it was time to get the rest of the family—then just walked out.

As a mother of a sick child, she has four lessons for healthcare professionals. I have copied them verbatim from her blog entry, because her voice is so poignant and so important: 

1) “Always acknowledge, appreciate and respect the family.”

2) “Please understand why we are so anxious to know a diagnosis. We appreciate your desire to be thorough and “solve” our child’s problem, but that solution is often just the beginning for us. We’re anxious to know how our lives will change and to find ways to balance that change with parenting techniques that will make our children’s lives better.” 

3) “We need to be partners in the care of our kids. You see them for a few hours every year; we keep them alive for the other 8,755 hours.”

3) “We know that part of being a team means getting bad news. However, you have the power to layer those conversations with as much hope and understanding as possible. Please do your best to exercise that power.”

Doctors, nurses, health professionals—take heed. Patients, too—remember that you can demand this standard of care from your healthcare providers. Make sure your doctor listens. Ask for a diagnosis. Assure your doctor that it’s OK if she’s not 100% sure; please share with you what she knows. Partner in your care. Ask your doctor why he is recommending this test or that treatment. Exercise your power to get the care that you and your loved ones deserve.

Alexis is now six. Catherine describes how she watched a pediatrician burst into tears as she watched Alexis walk hand-in-hand with her dad. 

“That afternoon,” she writes, “We all saw Alexis as not a collection of problems but as a bundle of hope. We knew that six years after her birth, ‘A’ didn’t stand for Alexis, it stood for Awesome.”

Thanks to Thriving, Boston Children’s Hospital pediatric health blog, for allowing parts of Catherine’s original blog to be published. Have other stories to share that may help other patients, caregivers, and health professionals? I welcome your comments.