We, who work in end of life care, offer guidance, directions, information, how-to’s and what-to-do’s but after the words are given and repeated over and over what do we do? What do we do when there is nothing more to say? What do we do when we have no answers to give? When no amount of knowledge can change what is happening. Nothing can affect what is happening.
I vividly remember, even though it was probably 30 years ago, sitting by a young woman’s bedside. We were talking about, well actually she was talking about and I was listening to, her anguish of being so young and faced with dying so soon. It wasn’t fair! She was supposed to live to be a grandmother and here she was not even a mother AND DYING.
What do you say to something like that? Nothing. There are no words to bring comfort to her. We sat, me on a chair beside the bed and her in her hospital bed in her living room, and she raged, cried, screamed, sobbed, shook and finally looked me in the eye and said, “I need someone to hold me.” So I did. I actually climbed onto her bed, wrapped my arms around her and just held her. No words. Nothing to say. Touch was needed. We lay together on the bed until she fell asleep and then I quietly left.
I don’t often, actually rarely, crawl in bed with someone but I do use touch and closeness as part of my healing/comforting tool kit. I shake hands with the idea that bonding begins when I walk in the door. I sit close to people, not across from them, at a table or even across the room. I often ask people if I can give them a hug. Not invading their space unwelcome. Sometimes while sitting close I reach out and touch a hand, arm, a shoulder. The touch saying someone is here. You are not alone.
I think we healthcare workers rely on our words as our offering. Explanations, suggestions, instructions, even using words to offer condolences and trying to comfort. And yes, words are a big part of our job but we also need to recognize that just being there, time spent, is a comfort and belongs in our tool kit, too. “I’ll sit with you for a while. We don’t have to talk” can offer more comfort and healing than all the words we say.
Comfortable presence is what I am going to call what I’m suggesting we give when words no longer matter. When words serve no purpose.
Something More… about What Do You Do When Words Become Meaningless?
With all the regulations and charting that must be followed, we can end up losing the heart of hospice care. Patients and families are at their most vulnerable. I encourage those in end of life care to read my book, The Final Act of Living: Reflections of a Long-Time Hospice Nurse. In it I share scenarios that I learned from and share tools for how to work with families (even challenging ones).