How to Communicate at the End of Life When Communication Seems Impossible

What does a caregiver perceive while in a cultivated empathic and compassionate state of consciousness, when listening to the dying?

In my previous article, last month I explained the principles of ECEL, a method of Empathic Care of the End of Life. I invite you to go and read it again, as the present article is the result of one of its readers asking me: “Once you are trained in sustaining a different state of consciousness, what happens? What do you feel and perceive? How do your perceptions change?”

The short answer is that it will be different and surprising every time. The fact you are surprised is so important. It means you did not fabricate it! It counters the doubting inner voice that says, “How can you be sure this is not just your projection?”

If you want to listen deeply, enter this experience with every part of you: body, speech and mind.

Body does include body language, for sure: avoid postures suggesting closure, like crossed legs and arms, or ones indicating you are precariously present there, like remaining at the doorway instead of fully entering the room, or sitting on the edge of the chair, or distractedly looking out of the window or at your watch!

But ‘Body’ also means, here, the entire physical setting, and sometimes it is a matter of some small adjustments. Remove barriers. If there is a table in between you and the dying, remove it or go and sit at their side. Be close enough for them to reach you if they need to. Do not tower over them (I often use role-play during my workshops to illustrate this point: one lays down, the other just stands there, above him, with all his benevolence... nevertheless, the one who is lying down always feel uncomfortable!)

Lastly, ‘body’ can mean the way you touch them. I remember one person having been severely burned in a huge gas explosion, in the late Seventies. You could not tell whether this being was young or old, a male or a female. I knew from the doctor he was a young man. Doctors had immersed him in a liquid. When the accident happened, a big international conference on plastic surgery was going on in town, so all the greatest experts of the world were urgently asked to visit the worst cases. Scientific translators were needed, but few of them could stand what they had to see, so many gave up. This is how I found myself there; a very young aspiring translator, not yet graduated, among specialists who were discussing how terrible this young man’s situation was, and how short his life span would be. In front of him! Speaking loudly, regardless of how the young man might be feeling inside. Of course he could not talk, but I can still hear his moaning. What I felt was how he was absolutely present, and terrorized. Afraid of death, of pain, and of this solitude. No relatives were admitted. I felt how strongly he needed to be hugged, and cuddled, consoled... and it was physically impossible. He was untouchable.

This is when I discovered I could touch him with my eyes. I had no clue at that time of what haptonomy1 was, I simply did it. Haptonomy is all about touch and feel, and ‘touching with the eyes’ is included. It is the vastness of your gaze, reflecting the calm, open and compassionate state you are trained in, that touches them. It is a concave gaze, like two open arms. The other can rest in it. It is the opposite of the convex, analytical gaze that looks at you as its object. So, the outer aspect of me was translating what the doctors were saying. I whispered their harsh words in the hope he would not hear. Internally, the habit of meditation had created a safe place; a calm, spacious and compassionate state in which he could rest too. At that time I was just feeling it; later I would confirm what I felt through study. I was not yet 22.

Speech, here, does not mean that you are supposed to know in advance what to say. It is quite the opposite: no list of catchy phrases. Every time you meet the dying, you are both free of preconceptions because of the empathic state you are both in. To the dying it happens naturally, while you reach it through training. No judgments, projections, or expectations. Just be there, open and available. You will find a magic word that works for you: my mantra is “I am here, for you.” The point of it is that when mentally pronounced, it switches on a completely new inner state, where time no longer exists. And the dying, being highly empathic, feel it. Here, ‘speech’ often means ‘silence’ too, but they might comment on your silence: “This is the first time someone is completely there for me. It’s never happened in all my life.”

In ECEL, we train to stay in silence. Are we at ease, or falling into anxiety, hoping the silence will be broken?

Our warmth can speak in many ways, like through creativity. In a Day Hospital where I worked in Italy, for instance, people there for chemo sessions were asked this question: “If you were on a deserted island in the middle of the ocean, and could see a bottle containing a message, floating on the water, what would you like the message to say?” Patients really are on such an island, surrounded by the water of fear, death, loneliness. The message they would like to find is exactly the opposite. Then they are given a pen and some paper to write the message they would be happy to receive. And their mind shifts from fear to something encouraging, resilient, hopeful. They enter a highly coherent state, which will first allow them to face their chemo session more positively, and secondly all these messages are collected; becoming a truly inspirational resource for other patients; at their disposal.

Third, Mind. Here, it means the state you are in, and therefore what you emanate, plus what you can receive empathically.

Once you are able to enter the correct state at will, maybe with the support of your personal magic formula that switches on your new mindset, a considerable percent of the work is done. Still, we have to dedicate part of our mind to be vigilant, as we tend to flicker if we are not well trained. The list of things you have planned for the day might pop up in your mind while you are supposed to be just unconditionally present, open, and compassionate, just ‘there’ for the other!

Another terrible temptation, at the beginning, is to resonate with the wrong thing. They tell you of their sadness or suffering? You fall in the trap, and start using this as an opportunity to tell them how difficult the last week has been for you. Remember you are there for them, not the opposite! They share their uncertainties with you? You start to impose your opinions, ‘for their own good,’ of course! Or, when they say how someone treated them badly, you pile it on, adding your blame to theirs.

Be careful not to slip from compassion into pity, too. Sometimes what sneakily pushes us out of the track of compassion is the subtle, invisible fear that by listening to their suffering we might be overwhelmed. This can happen, of course, and it may end up in ‘burn out.’ But this happens only if you are just empathizing with them from this limited, wrong perspective. It will never happen if you listen from the space of compassion.

Enter their room as an ordinary person, but listen to them from an extraordinary state!

What can we perceive, while listening from that extraordinary state?

Often you discover they have plans. Yes. You didn’t misread. They have plenty! Stay open, as sickness is something you have, not something you are. They’re still the same person they were before becoming terminally ill, wanting to leave their footprint in this world. I remember a lady who really loved children; she wanted to become a teacher but hadn’t a chance to study in her life. “It’s too late,” she whispered. This is what I heard. What I felt was the opposite: she was already paralyzed by Parkinson’s and almost mute, but really wanted to make this dream true.

Second, then, listen for life suggestions that might be conducive to a solution, and keep staying open. Was there any chance of making it happen, even symbolically? An oversized computer keyboard, a plastic extension of the single finger she could still barely direct, and—last but not least—plenty of warm support from her friends, were all available. She started to write funny, tender, short fables for children, encouraging them not to give up in life, and to be generous and fair. She movingly invented a pen name: Wobbly Granma. A small local publisher brought in a wonderful illustrator and it became a book. Then, a primary school invited Wobbly Granma! She could neither speak nor move anymore; she was brought there in her wheel chair. The children had prepared a beautiful party in her honor and some of them gave a reading of a few of her tales. A big smile appeared on her otherwise stony face. This was her first lesson to the children, in a school. An unforgettable lesson of courage, endurance, and resilience. In a sense, her inner mission was accomplished. She died a few weeks later.

Another thing you can perceive with the dying is their pre-death visions. Don’t automatically believe this is the effect of drugs. These visions have a special quality that hallucinations do not have. The dying have their own wisdom and it can manifest in this way too. Who are we, to reduce these visions to simple epiphenomena of drugs? These visions are often an incredible component of dying well. Learn how to recognize them from the correct state.

Our task is to become a magnifying glass of their own, deep, wise solutions; bringing them to their awareness, and then to support them, in any way we can.

Remember, each culture has its own winning strategies for critical times. So do individuals, each one being an expression of some culture. They just need someone to walk side-by-side with them, toward theirs!