My mother died from breast cancer after living with it for four long years. It felt like my family and extended family experienced the highs and lows of having cancer too because we were with her for every single appointment along the illness journey. In her final year of life, she got weaker and more frail. I wish I’d have known that none of her doctors would ever speak to us about the possibility that she could die, even though looking back, her dying was gradual and predictable.
So when she died, my family was completely unprepared. The doctors spent all their time talking about chemotherapy and white blood cell counts, but not about what counted to my mother. She was in a hospital bed for weeks when she died, though she always wanted to be at home surrounded by family. They focused on the size of the tumor compared to the past, not on what we should expect in the future. In their avoidance to discuss her end of life, they gave us false hope.
My mother was my hero in life. She was the most generous person I have ever known. She taught me to be kind to others, to find the bright side of things, and through her death, to live life with purpose. I wish I’d have known that her time was running out because she and I never had the chance to have the conversations to get closure, find peace, and say goodbye.
The experience of my mother dying still haunts me even though it was nearly 30 years ago. The saddest part is that I still hear the same stories today from others. As a researcher who interviews patients with serious illness, and their families, they often say they feel unprepared, in the dark, and overwhelmed. The reality is most patients and families, when facing serious illness, will not get the support they need from the health care system. The system doesn’t have enough people, time, space or money to do much more. So instead of trying to get doctors to do more, I am hoping patients and families can be the catalyst for transforming the caring journey. Fortunately, patients and families far outnumber doctors. I have spent my career learning and sharing ways to better prepare for the caring journey. I hope others with their own caring stories will be willing to share their lessons learned too.