Conscious Departures

End of Life Care and Communication April 15, 2012

During the time I was caregiving for K one thing that we hadn’t thought about seriously enough was communication. If someone is dying from a serious illness you may find all kinds of things happening to the quality and quantity of communication you’ll have with them*. For instance I had read, and was told, that at some point there could be hallucinations or harshness towards the caregivers, family and so on.  Having learned about this possibility I felt prepared and on alert, and sure enough I did experience some of that. Not that I knew how to handle it, but at least I wasn’t blindsided and panicky.

Although there are a variety of topics regarding communication during the end of life process, there were some helpful things I learned afterwards that I wish I had known earlier on. Comparing notes with someone else who went through a similar caregiving situation helped me gain some insight into the preparations we can make prior to entering later stages of the disease.

When K reached the point where verbal communication became too strenuous I really longed for a way to communicate and verify that she was comfortable and I was meeting her needs. But all too often I felt the communication was hit and miss, and as the disease progressed I only found it harder to decipher what she meant.

After K’s passing I spoke with a good friend of mine, Elisa, who lost David, her partner, to cancer. David was one of my closest friends. It wasn’t until I had my own experience with caregiving that I could appreciate what Elisa might have gone through and I needed to speak to her about her experience. Some of the things she shared with me about communication during the EOL process were memorable and important.

David was an amazing and very bright individual. I always admired his ability to stay clear and conscious about how he approached just about everything. The strong convictions guiding his life was uplifting and going through the dying process didn’t stop him from trying to maintain the quality in which he did things. Even during the arduous process he endured from metastasized lung cancer going to his brain and bones, he continued to push against the ever shrinking boundaries of communication.

Part of this played out in his insistence on good communication from everyone else as well. For instance, when he had become too weak to move, Elisa hired two full time male nurses who were capable of helping David. David was thin but big, standing at about 6’3” if not more, while Elisa is at least a foot shorter. Elisa’s brother, also a doctor, was concerned that without full time assistance either David would get hurt or Elisa would get hurt trying to help him. They already had an incident where Elisa needed to call the fire department to move David to his room. It’s a serious situation that I’m sure some home caregivers never consider.

On a day that the nurse and Elisa were preparing to turn David over in his bed, David stopped them and asked,  “Is everyone agreed on what the outcome of this action is going to be?” Elisa was stopped cold in her tracks.  So first she made sure David understood what it was they were about to do.  David said “Yes I do understand, but do not start until everyone has agreed on what the outcome is going to be.” This was important to him because if they didn’t share the same understanding  a false move could have resulted in causing David a great deal of pain due to the cancer in his bones; and he, more than anyone, was well aware of that.

One thing I found particularly brilliant was how he trained the nurses to care for his basic needs. After he found out that the cancer had gone into his brain and that it could affect his ability to communicate, he began to think and devise ways he could overcome it. When he reached the point of requiring the full time male nurses, he began by communicating his needs to them verbally. His needs were very basic such as wanting  water, having his bed raised up or lowered, getting a little food, relieving himself and so on.

But in the period of time that he had to think about losing his communication powers he had devised a set of hand signals for each of his comfort needs. So although he was able to verbalize what he wanted to the nurses he also used the corresponding hand signal so the nurses would link the two. In time the nurses could understand him entirely by hand gesture. When he had reached the point where he could no longer talk, the nurses would stand at the foot of his bed and wait for a hand signal and then responded accordingly.

These all sound like pretty simple things, but when a loved one reaches a point where communication is very difficult we so much want to make sure they are comfortable and their wishes are met. Without clear communication it can become a guessing game and frustrating for the caregiver and very possibly for the person dying. Yet, I wonder how many people think it through or come up with a game plan. I know I didn’t.

At one point, with K, all I had left to work with was the expression on her face. I would focus in primarily at how relaxed her eyebrows looked. If I saw her eyebrows kind of furrowed and a slight grimace on her face then I knew something was up. If her eyebrows and face were relaxed then I assumed everything was fine. If I should find myself once again in a caregiving situation, or if it is my turn to get the care, perhaps I would use that as the basis for a consciously agreed upon form of communication. That seems to be something a person can do up through their final day.

I’d love to hear other examples regarding communication during EOL care. The book  Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying focuses on a whole other level of communication and I highly recommend it. The book gave me a doorway into considering the variety of communication we can encounter during a time when every little hand gesture, unusual request or facial wrinkle becomes so important.

*NOTE: I am not trying to address the ever important subject of dementia which on it’s own would be a vast topic when it comes to communication and is something I have no experience with.