In 1963 my best friend in 3rd grade was Roger. Everyday Roger would carry all of my books home from school. We would play at each other’s house after school and sometimes I would go with him to see his doctor. Nobody told me Roger was sick until Roger died. I was confused because no one would talk to me about it. I think he died of leukemia. I learned way too early that in this culture we do not talk about death, even if it takes away your best friend.
In the 1970's when both my nana and grandpa died at home our family was with them both. There were no heroics, no rushing to the ER and no one called 911. No extreme life saving measures were even available for these very special people in their late 80’s. We did not prolong their dying. From my perspective now, that was most fortunate for them and for our family.
Thirty years later in 2008 I watched my mother die one month after open heart surgery, having never left the ICU. She died in that ICU, unable to get out of bed or speak because of her endotracheal tube as well as tubes for feeding and hydration.
Between my grandparent's deaths and my mother’s death something had changed in the way we die in this country. Preventing dying became a medical emergency in a health care system that took over the business of prolonging dying.
In 2014 my father was in the same ICU, in the same hospital. However, between 2008 and 2014 I had learned a lot about death and dying as well as how a hospital system functions well, and how it does not. Because we had those important conversations when my father was well, our family was able to make those difficult decisions as my dad moved towards his end of life.
Dad died at home surrounded by his family, just as his parents did decades earlier. His death at home is something the vast majority of people in this country wish for themselves and for their loved ones. However, the reality is that too many of us still die in hospitals, rehabilitation centers or in nursing homes.
Collectively we are creating a revolution that is changing this system. The revolution starts by having these important conversations before the crisis with ourselves and with our loved ones.
