To die or not to die

To die or not to die

I wasn’t dying, but the guy next to me was. This man, an Italian second generation 40-year old immigrant called Alessandro, suffered from terminal lung cancer. The cancer was metastasized into his bone marrow. Every day the two-bed room in the Belgian hospital would be filled with his family. Generally about ten of them would stay in our room during the day. First his mother would come in very early in the morning. She would only leave when she was sent out by the nurses during the evening. Next his young wife would enter. And during the course of the day brothers and sisters would come in, and his two kids in the age of young adolescence. And then there was I: being treated for non-Hodgkin lymphoma and a pneumothorax which was the result of a surgical procedure.
Each day in the room there was a deep silence. Not the silence of the ear, because there always was a lot of noise, as Italian people are very good at being noisy. It was the silence of the heart. A silence about what would happen to Alessandro and his loved ones. A silence which was filled with false hope and expectation. A silence which concealed the truth of his dying and brought falseness in this microworld. This silence was caused – or maybe better: maintained – by denial of what was the reality of Alessandro’s condition and prospects and an inability to address the inevitable course of his dying.
This silence contributed to a great deal of confusion. In Alessandro who was hallucinating because of the high dose of morphine which was continually infused into his fragile body. I suppose that – at least now and then -he was aware that he was dying. But persistently he was being made to believe that everything would be alright soon. There was the agony in his eyes when I tried to connect. His wife was confused as she was unable to discuss with him issues which were of great importance for her and her children in their continuing life after Alessandro’s death: financial matters, burial, health and life insurance, the children’s education. His brothers and sisters who had much difficulty to cope with the prospect of losing their oldest brother, who probably had been their teacher in some and companion in many life matters. His mother who was continually begging God with his bleeding heart ( a picture she had attached to the notice board) to reverse the inevitable course of Allessandro’s fatal condition for the better. And finally in me, as I felt I was an uninvited actor in a bad drama for which a scenario was lacking. I felt shame about my bad acting as I didn’t know how to deal with a situation which I had not encountered before in my life. All these people in one sense or another were harmed by being involved in the situation the way they were.
On two occasions during my stay with Alessandro in the same hospital room a faith healer, who was invited by Alessandro’s sisters, would enter the room to pray with the patient and family. In both cases after some murmuring this man would three or four times exclaim loudly: “Now you are cured!!!” I felt very embarrassed and aggressive about this course of action and still feel sorrowful that I haven’t expressed my critical views towards him about so much dishonesty and injustice.
When some time ago I read Barbara Ehrenreich’s Smile or Die, How Positive Thinking Fooled America & The World – which partly deals with the pernicious impact of positive thinking on medicine and cancer sufferers – I very much became to realize that optimism if a cure for anything, isn’t a cure for cancer. On the contrary: pretending that this is, or might be, the case withholds cancer sufferers and their loved ones the opportunity to be part of a process of saying goodbye to each other and to life.
More than I ever have been, I am convinced that honesty ought to be a central value and virtue in health care in general, and in the care for the dying in particular. This does not mean that hope and expectation for the better ought to be eliminated from the deathbed. Neither does it imply that ‘the truth’ always ought to be continually and totally in the open. What I do believe lacked in the care Alessandro and his family received was attention to their non-medical needs in a precarious and unaccustomed situation. Their hearts were silent – or silenced – but ought to have had the opportunity and space to speak or cry out.
I don’t suppose that the attending physicians and nurses didn’t provide the best care from a medical and nursing point of view. What lacked in this case was attention to the non-medical needs of Alessandro and his next-of-kin. Compassion in such cases requires sensitivity to unspoken voices, and to pains of the heart, as well as honest and truthful dialogue amongst all those involved.

Note: Barbara Ehrenreich, Smile or Die. How Positive Thinking Fooled America & The New World. London: Granta, 2009.