I looked up the acronym F.E.A.R. and found some pretty interesting interpretations online. I again realized that interpretation is based in perspective. Here are some of the online acronyms:
- Forget Everything and Run
- Face Everything and Rejoice
- Finding Excuses and Reasons
- Fear Expressed Allows Relief
- Frantic Effort to Avoid Reality
- Face Everything and Respond
Based on the opposite interpretations these statements illustrate, fear, or rather our reaction to it, can either motivate us or stop us in our tracks. And so it goes with end-of-life conversations. Many people we’ve come in contact with express fear of just starting end-of-life discussions with people they love (or with people to whom they provide healthcare services). Others fear having to make decisions for a loved one who can no longer speak for themselves. Some fear that just talking about death will cause it to happen to someone they love, or that someone they love will give up their fight.
I once approached a woman with a very serious, life-limiting illness about what kind of care she wanted. She was obviously near death yet no one in her circle had any idea if, or how far, she would want to pursue treatment or surgical intervention. The physical changes in her body were blatantly evident of impending death (probably within 24-48 hours). Those in her circle recognized that she would likely not live “very much longer” but no one was prepared to make decisions or even ask her the questions that needed to be answered at this moment.
This was not the time to ask her about her values and beliefs, to abstractly discuss options, or to define the possible outcomes of aggressive treatment versus “doing nothing”. This was a time for pointed, direct questions. So, I checked my own fear at the door and asked her what needed to be asked. Did she want to go back to the hospital? Her answer was “No.” It was likely a surgeon would need to perform extensive, invasive procedures to try to save her life (if she lived through the surgery). What would she tell a surgeon if the only option was amputation? This time, her response was an emphatic “NO!” Does she want to be kept comfortable with her pain managed, even if she becomes unconscious? “Yes, I want to be comfortable. Knock me out.”
What was my own fear in advance of this situation? Would I upset her circle of family and friends who were at bedside in her home to the point they would ask me to leave the home? Would I ask the right questions in the right order? Would she respond or shut down, giving us no insight on how to proceed?
My fears were unfounded. Her family and friends were relieved that I was the one asking those questions. They were too emotionally invested to utter the questions that so desperately needed answers. The order of questions seemed to flow from me as if guided by another Realm. She responded concisely, clearly articulating her beliefs and values in very simple responses. We were able to put a hospice plan in place quickly. Her pain was managed; she was made comfortable. She died peacefully with her best friend at her side 19 hours later.
With death that close, we were all forced to “Face Everything and Respond.” That experience might suggest that the previous responses were to “Forget Everything and Run.”
My husband and I are ridiculously hooked on the show “Breaking Bad”. We were binge watching it recently and one of the scenes talks about fear. In that scene, one man advises another about how to face his fear: “Get up, get out in the real world and you kick that (expletive) as hard as you can right in the teeth.” I think we have a responsibility to ourselves and those we love to do just that, especially with the general fear of talking about death and making our wishes known. Forcing acknowledgement of fear and taking action to face it takes courage. The courage comes from wanting to make things easier (or more comfortable) for someone else. It’s not rocket science but it is difficult. Continuing to run from fear only gives it more power over us and robs us of our freedom of choice.
Caring Choices offers a tool to help individuals and families face the fear of conversation. It becomes easier than you might imagine to talk about death, especially if you start conversations when you’re healthy. You can take your time examining values and beliefs, people and places and understanding definitions and resources long before you’re faced to make decisions about complex care. Contact Caring Choices and let us help you “Face Everything and Respond.”
(c) 2014 Caring Choices