Olgas Dilemma

Summary

Olga B. was a Russian girl from Odessa (Ukraine) who spent (between her fifth and her 17th year of life) 28 months in our hospital as an in-patient. She had cystic fibrosis (CF) with severe pulmonary involvement. At the age of 19 years, while a student in Leningrad, she developed progressive respiratory failure. She under-went a tracheotomy and received mechanical ventilation. Nevertheless, she died 2 weeks later. That was in 1984. After Olga’s death her mother wrote a long letter of mourning to us. She described how her beloved daughter had had to suffer from the increasing respiratory insufficiency, the fear of future events, and the inability to speak. The life-sustaining treatment had worsened the quality of her life and only prolonged the process of dying. We discussed this case and decided for ourselves, considering Olga’s dilemma, never to perform a tracheotomy and never to start mechanical ventilation in end-stage CF. That was more than 1o years ago.

Olga’s dilemma was the crucial situation: to die or to endure tracheotomy and ventilation. That involves many ethical problems. It’s primarily the medical doctor’s decision, but this decision cannot be made without hearing the patient’s and/or his or her parents’ opinion. It’s a problem of how to estimate the patient’s autonomy and how to act in his or her best interest. How long should we continue aggressive treatment? When do we have the right — or the obligation — to stop it?

Times have changed. Substantial progress has been made in the therapy of CF and survival of patients has been prolonged. The possibilities of heart-lung or lung transplantation (even the transplantation of living, related donor lungs) give our patients new hope. Nasal mask ventilation can be a bridge to it. So we have to discuss the old problem of Olga’s dilemma again. But we should not forget Olga and the many other severely ill CF patients, their reduced quality of life, their long suffering and their death.