Photo by Glen Carrie
Since arrival she had been very anxious and spent most of the first few days alone in her room. “I don’t want to interact with anyone, please leave me alone, keep the curtains closed and the lights off” – like a hermit crab withdrawing deeper into her shell.
Worsening pain had brought her to us, severe physical pain, the result of increasingly bad news about the toll her disease was taking on her body over the past six months, and also likely emotional pain as evidenced by worsening anxiety. Despite the team’s best attempts at connecting she remained aloof and guarded, sleep being a source of solace.
Her family were very worried, but they still had to go back home to their worlds which continued to turn. Her anxiety had not lessened and if anything was growing. She had become increasingly demanding, and seemed to have reached a crescendo earlier in the morning.
All of this set up a first meeting that sounded as if it would be a challenge, so it was left to the end of the ward round. Partially to allow for more time, but to be completely honest, also put off for as long as possible.
“While you were sleeping before, your family mentioned that you had some questions. What’s going on?”
Her very intense reply was, “my physical pain is bad, but my emotional pain is worse. I can’t stand it anymore, I need to escape.”
She rhetorically asked for Euthanasia, though she knew that it was illegal and went against the Hippocratic Oath, she heard the expected answer, that it could not be provided. A common and predictable conversation held in Hospices around the world.
“Can I be put to sleep so that I’ll be made unaware of what is going on, can that be done?”
It was explained that Palliative Sedation therapy could only be given as a last resort, if all other treatments failed to ease her suffering, and that there were still some that had not been trialled yet.
She agreed to adding in another pain medication to see if it would help her other medications work better.
“Tell me about your emotional pain.”
She told the story of how she had moved here from a place far away, how she had to escape the situation that she had been in. That she had left her family behind, there were major differences in belief systems, amongst other things, which had meant being estranged for decades. She had been very surprised, during her family’s two week visit, to find that she liked her sibling very much. The mystery of why one of her parents had never visited her had been solved, a fear of flying that had never been communicated, until now.
She had overcome disability and worked harder than everyone else to be successful in her job, but had not felt recognised for her efforts. Work was important to her, not being able to work had been devastating. Loss after loss accumulated; loss of weight, loss of energy, loss of income, loss of wellbeing, loss of hair, loss of independence, but the loss of control was the worst and led to overwhelming levels of anxiety.
The engaged conversation ended after 40 minutes when lunch arrived.
Overnight her pain seemed to be better controlled, and she appeared to be calmer, something was working.
There was a noticeable difference in her demeanour the next morning, she seemed almost like a different person. Much less intense, much more calm and relaxed, even smiling at times. So different that questions were asked to see if she had become delirious due to the medication change. “No, I feel better, I think I’ve turned the corner mentally/emotionally.” Her family thought that she was thinking in a clearer fashion than she had for a while. Discussions were had about non-pharmacological relaxation aids; hot baths, mysteries to read, websites to check out.
The same calmness was apparent the following morning, whatever had happened two days ago seemed to have stuck. She was smiling a lot more, and the interactions within the room were light upbeat, her pain was better controlled. She talked about accepting her current situation, “make no mistake, I’d still be happy to die right now, but I am not in such a hurry any more.” She seemed like she was going to try to enjoy whatever she could while waiting.
Another day started on the ward, a candle had been lit indicating that someone had died overnight. It must be old Mr Such and Such, he was the most likely departee, it couldn’t be…
But it was. What had happened?
She had rung for the nurse while on the toilet. “I think I’m about to die.”
The nurse had taken her back to bed.
“I think I’m going to die right now, what should I do?”
“Let it happen. Do you want me to call your family?”
“No, its okay, what am I supposed to do?”
“Let yourself go, I’ll be here with you,” while holding her hands.
Mere minutes later, her final breaths were taken, and she made her final escape.
Somehow in her last three days she had found inner peace that had eluded her for decades. Even in the last days of her life she had experienced healing and the resultant calmness had allowed her death to occur naturally.