A beautiful story behind “full code”.

Full code.

Two words that appears so innocuous, may not mean a lot to an average person, but in the world of palliative are, carries a certain context.  

Full code in medical terms is a designation that means wanting chest compression, intubation, transfer to the Intensive Care Unit (ICU), ie. all the most aggressive interventions in effort to have a chance of regaining life. And if someone has “full code” designated as their code status in our patient population, it sometimes signals that they may not understand the extent of their illness, or have unrealistic goals based on how unwell they are.

This changed when I met this patient - a lovely lady from the UK in her 70s with metastatic breast cancer. Seeing the words “full code” on her chart, I was worried that perhaps she may not have a realistic understanding of her illness and/or have unrealistic goals for her treatment. As part of our routine assessment, we discussed it and she acknowledged her illness, understood the ramifications of being full code and possibly low utility of some of these interventions but was also quite clear that she wants to remain full code for now.

It was only when I met her husband and could see the palpable love between them that I not only know her code status but understood her code status.

This patient Mary and her husband Bill*, met when they were both in the UK. They were just about to celebrate their 40+ years of marriage. And in my time seeing both of them together for the first time, it became quickly apparent how proud they were of the family they created - with each other and with their three adult children. Bill and Mary shared  pearls of parenting advice with generosity: 1) Be consistent with your expectations. 2) Be clear about the values and lessons behind discipline. Being strict is necessary but should always be done with kindness. Children need structure and expectations.

Bill continued to explain how, building a beautiful family of their own based on love was especially important as he himself grew up with an abusive father and mother who died early of MS.

And I’ll never forget when he looked at Mary with the look of utmost respect and love in his eyes when he said,

““she changed my life, she saved me”. ”

 In that moment, I understood everything behind the importance of her “full code”.

They understand perfectly her condition, he himself battled with cancer. But it’s the intensity of their love, still strong decades later. His desperation of wanting her to be alive, and conversely her will to be alive for him, that maintains their hope and desire for life. For them, it’s worth all the hospital trips, the medical tests, the hospitalizations, unwanted side effects of chemotherapy, and yes, the possible risks of aggressive interventions such as chest compression and intubation. For them, it demonstrates the sliver of hope to keep the love of his life alive.

There is so much context and nuances into patients and their families lives that often times we do not have the luxury of knowing because of the structure of healthcare that we work in. But when we do, there often is a reason behind everyone’s decision.

*Names changed to keep patient confidentiality.