End of Life……….Why is it so hard to talk about?
As a Geriatric Care Manager, much of what I do, is to help my clients gracefully and peacefully, with dignity….move from a productive active thriving life…to a “good death”. But what does that mean?
The generation that we are currently working with right now, I feel, is the last generation that holds in all their worries, fears…all the questions about “what will happen when I die?” I have tried so very hard to sit and have the conversations that could potentially ease their minds and set them “free” before the good Lord takes them. But many elders who are currently 80, 90 and over (right now) are “tough nuts to crack”. Talking about sensitive topics are taboo, and tapping into the unknown is scary. But that doesn’t mean we shouldn’t try. So how do you facilitate that conversation?
Death, as one of the most vulnerable moments patients and families experience, should be guided by patients’ wishes and informed by empathy. Conversations surrounding death should be destigmatized and reframed to be part and parcel of medical education. These conversations shouldn’t be viewed as awkward, but instead should be normalized. And they should happen over time whenever possible, not just once, and not just in the moments preceding eminent death.
According to Kübler-Ross, the five stages of loss are denial, anger, bargaining, depression, and acceptance. Kübler-Ross (1965) described five stages of loss experienced by someone who faces the news of their impending death (based on her work and interviews with terminally ill patients).
Understanding these phases and being mindful as to what stage your loved one or client is in, can be so helpful. You would not want to force lots of information about the active stages of dying on someone “in denial” On the other hand, waiting for the acceptance phase to start the conversation is too late. Often times, At that point, the emotional and physical body have started the journey to shutting down and the person is not able to communicate as well.
As hard as it is, when elders are in the “anger” phase, is when I try to elicit “what are you thinking, what are you feeling?” Because they are in the anger phase, I often get “I'm mad! Why me? Why now? Why is God doing this to me?” Those are all wonderful questions that can help jumpstart a conversation.
Can you tell me why your mad? Where do you feel that “mad” in your body? What other words can you use to describe how you feel?
Tell me why you think God is doing this to you- what is your relationship with God (etc)? Would you like to ask him questions now, or share your thoughts and worries with him?
What are you worried about when your time comes? Can we talk about what might be making you nervous or apprehensive?
While sitting very close, eye to eye, and hand in hand….I ask that the angels and guides of the elder to join us. I ask God to join us. Whomever the elder is connected to spiritually or religiously, I ask “them” to join us. And very softly/gently…I start asking the very hard questions:
Do you have any regrets that you want to set free?
Is there anyone you need to have a conversation with about this process or about things you have left unsaid?
Is there something you want to do before you no longer can? (take a trip, see someone special, the sky is the limit)
Do you want to dictate a letter to someone (or several), and then I write while they are dictating.
Is there something you did that you want to be forgiven for? Are you holding on to that guilt? We need to set it free
Is there someone that YOU need to forgive and if so, should we call that person, or write a letter?
What are your questions about what will happen after your physical body passes? (and according to their beliefs, I facilitate a conversation, and sometimes do some research on it to help them. Sometimes I have books to share.
Helping my clients have a “good death” is the highest honor. Being with them when they pass is the pinnacle of my career. It does not get any better…..
Death does not have to be scary or sad or dreaded. Death happens to us all, and depending on your individual beliefs, and how open your client/family is to conversation, will depend on what it looks like at the very end. Some will hang on for days because they are unsure what is on the “other side”. Some go gracefully and timely…knowing they are at peace with where they are going/not going. It’s a very individual phenomenon, but the more we can help these elders with important conversations early on…..the more at PEACE they will be at the last stage.
Many Blessings
Sheryl Fappiano
Elder Care Access