“There's only one thing I want to know. Did she suffer?” The question hung in the air as we prepared to go into our quarterly memorial service for those who had died in our hospital in the preceding months. It was asked by a loving son who had faithfully waited at the bedside of his elderly mother while she passed away of congestive heart failure.
I hesitated. “No. It did not appear to us that she did.” I remembered her well. She had not been conscious for much of her stay in the palliative care unit. Her three grown sons appeared to suffer more than she did. But I could not say for certain that she did not. She had remained unresponsive, but her passing had involved significant agonal breathing, controlled with opioid. Agonal. In extremis. The sundering of the soul from the body. There is a ripping, a tearing away in death that must involve suffering on some level. The words themselves have connotations of suffering.
Who is in agreement about what constitutes suffering? Suffering is what the patient says it is. It is as subjective as it gets. We register the Edmonton Symptom Assessment Scale (ESAS). We ponder. Do they need a little more pain medication? Perhaps some scopolamine to dry up the terminal secretions. What about the final temperature dysregulation? To treat or not to treat. Suffering. I don't know. I do what I think would benefit the patient. I try to alleviate suffering. But it is only an inperfect guess, a travelling with (or an attempt to keep up with) an explorer who is way ahead of me along the path of dying.
Who knows what the process of death involves? It is mystery, just as we will never know what the process of birth feels like. What is it like, being forced head first through a passage dark and moist and too small for you, gasping with a new kind of breathing which you've never known before? What assaults on the ears and eyes and skin, being for the first time in a new environment with sensations never felt before, harsh and unmuted by the waters of the womb? This is a new way of being. Does the transition involve suffering? Yet we do not sedate the baby nor give him analgesic. Just the mother. The explorer entering the world is way ahead of us. In a realm we know nothing about.
And what of the brain, that ultimate sensor and processor of everything that happens to us? Is it only there that we register and experience suffering? Without a knowledge of what happens in the brain, could we even venture to comment on what is suffering. Yet the brain too experiences death in dying; it ceases to process, to register, to experience. The next pioneers on the frontier of the science which places willing victims in a CT scan or MRI at the moment of death will only grasp a tiny window into the process of death. Death will elude them again, slipping away from them as the neurons misfire in dysfunction and gasp their last synaptic connection too.
And then there is the question of how we approach death. Might it affect our experience of death, believing that this is the end or not, questioning whether we have or have not left a lasting legacy, deciding whether we do or do not grieve what we have done? We are afraid of death. That is universal. Or are there those rare and wonderful human beings who embrace it when it comes as they do a bungee jump into the unknown precipice of human knowledge? And then, what about those who force death on themselves, snuffing out their lives like a candle, attempting to cut down death before it comes to stalk them? Do they experience it any differently than someone whose life is tragically ended in a moment with a head-on collision? Both are destructive acts, leaving an untapped potential, creating vacuums about what might have been and what could have happened; and there is suffering in that too. There are too many questions in this place, and no easy answers. Just a private feeling that death must involve suffering on some level, if not for the patient, at least for the loved ones. And yet, and yet it may involve more, much more than agony, perhaps even ecstasy.
He asked the question. It hung in the air. And so comes a question to the reader. What was I supposed to say? I drew back, equivocated. “Did she suffer?” “No, it did not appear that she did. It appeared that she did not.” That is all I can say. One day I will know. Now I see through a window darkly.
