-” Why don´t we ask her what she prefers?”.
With this phrase we ended the conversation. For fifteen minutes, their daughters and I had been trying to decide what would be the best for Carmen.
Carmen was an adorable old woman of almost eighty years old who had been admitted in the ICU a few days ago. A single criticism or complaint had not come out of her mouth these days, even when we put in her face the noninvasive mask for ventilation which pressed her on the ulcer by pressure from his nose. All seemed well for Carmen.
The income in ICU had been of those that we tend to say “a little limit”. Up to that time, she had lived with her moderate pulmonary fibrosis. Despite her frailty she had a good quality of life, she could slowly do everyday things at home, she went out to the street accompanied and was very attended by her daughters. Although we knew that an respiratory infection could be determinant in her evolution, we decided to give Carmen an opportunity with non invasive ventilatory support, assuming by both sides that that would be the therapeutic goal in the ICU. When I say “both sides” I am referring to his daughters and the intensivists, not to the patient, that we deliberately exclude in the decision not to worry Carmen about it.
The later evolution confirmed our predictions. High-flow oxygen therapy nor non invasive ventilation could alleviate her shortness of breath. She was exhausting. At that moment doubts appeared on daughters about whether the “agreed” performance was right. The moment in which only the ventilation mechanical invasive could offer her win a bit of time but without any guarantee of success come. The daughters were facing a cruel dilemma. In one hand, they did not felt comfortable with the decision to limit the treatment of support (“… If she has a chance to do is OK not to give her?”), but they did not want a no-win situation or keeping a suffer which they wanted to alleviate at all costs.
We had already spoken with the daughters the previous days with about living wills. In all these years of respiratory failure she never had been raised the issue of making living will and she never also had expressed by herself what her preferences were in the final moment. And in this way, we faced to these “hasty wills”. With all the sweetness and clarity that I was able I explained to Carmen in front of her daughters what the situation was, and what treatment options we had. The kindly eyes of Carmen were alternately looking to her daughters and to me, trying to find the answer in us. After closing a few seconds her eyes, when she opened them we could appreciate the determination in her look:
– “I want to live, and if the way is through intubation and connecting me a machine to have any chance, I want you to give it me”.
Few days later, Carmen died intubated and connected to a ventilator, surrounded by her family. Her decision had been respected.
All this history is full of failures easy of recognize. Why don´t we speak of death we want before it is imminent? Why don´t we help patients to reflect on this?. Why do we keep on taking decisions without the own interested, the patient, protecting us in the good will and in a badly understood protectionism?
How to reflect. How to lear. How to improve.
Intensivits. Hospital Universitario de Fuenlabrada.
Member of the International Research Humanizing Intensive Care Project.