Confronting Death: Have the Hard Conversations
I remember when I had to tell my dad that my brother was dead.
This happened in the 1990s, so before cell phone use was widespread. So he had a beeper. When he called back, I took the phone into the basement so he couldn’t hear my mother screaming in the background.
I remember the sound he made when I told him. His pain was palpable. It hit me in the chest like a freight train. But I could do nothing to help. I have never in my life felt more helpless. Later, I also had to break the news to my sister and my grandmother. I went in a police car to pick up my grandmother and bring her to the house to comfort my mom while I dealt with the cops, the coroner, the fire department, paramedics and I don’t know who else. Some of the memories are kind of a blur.
Hospice care, with all of its benefits, begins with a difficult conversation. While my worst-ever conversation was a somewhat dramatic example, hospice staff routinely must tell patients and families that death is coming and ask how they wish to face it, how they wish to live until that moment. I don’t envy them this responsibility.
Goals-of-care conversations should really happen upstream of hospice. Patients benefit the most from having their wishes documented before they reach a crisis point. However, many, if not most, other health care professionals are not trained or comfortable having these conversations.
To some, it may seem antithetical to their medical training – which is focused on sustaining and prolonging life and curing disease. They, like the families they serve, are often not ready to face the reality of death.
A 2014 study published in Palliative Supportive Care reported that more than half of respondents deferred conversations about advance directives to emergency room physicians. In 2016, 88% of residents reported little to no training on end-of-life care during residency.
This lack of training is a serious problem. It can lead to patients coming to hospice too late to reap the full benefits or not at all. It can lead to intensive, sometimes painful or invasive, treatments at the end of life that patients don’t really want, or that won’t help them in the long run.
My parents did it the right way. They sat us down and told us their wishes. They gave us information about their bank accounts and insurance policies, gave us keys to their house, the combination to their safe – basically the essential things we needed to know to manage their affairs if they were gone. It was a painful conversation to have. We didn’t want to think about it, but we must.
We need to have the difficult conversations to ensure quality, patient-centered care as life nears its end, or, preferably, long before.
Some healthcare providers are starting to refocus on this. I was struck that when my grandson, Caleb, was being born, a nurse came into the waiting room to ask me if I had an advance care plan. I wasn’t even a patient there.
We need more of this, and soon.