Editorial : Remembering Rosa

Michael McCabe
Issue 6, April 2002

Rosa Therese had a significant impact on the lives of many - myself included. I met her late one evening shortly after her birth in September 2000. Her parents, Peter and Rachel, had asked me to baptise her. She had been diagnosed earlier that day with a serious heart condition and was to be flown to Greenlane Hospital the following morning for further assessment and possible treatment.

In the weeks that followed we frequently discussed the various treatment options for Rosa. Although such discernment was very difficult at times I was left with a strong impression that due process had been followed over the decisions to treat her. Indeed, from a distance, I was impressed by Peter and Rachel's accounts of the wonderful care and the excellent communication between them and the staff at Greenlane Hospital. Great care, it seemed, was taken in helping them understand the benefits of proposed treatment options together with the possible burdens for Rosa.

After her surgery, further tests revealed that Rosa's mitral valve was too small for her heart to function normally. At that point Peter and Rachel had to consent to one of the most difficult decisions parents ever have to face - to withdraw ventilation, because it was medically futile. Even so, the wonderful care Rosa had been given continued up to the moment of her death. Her funeral, a Mass of the Angels, and burial, left me and the friends and family of Rachel and Peter with a profound sense of privilege – the privilege that comes from walking with families on their life journey. We were left with the sense that we had travelled a very difficult path together and that we were all the richer for it.

The power of that journey only serves to highlight the profound sorrow we now feel when, some sixteen months later, Peter and Rachel have to revisit the whole process of Rosa's life and death. The betrayal of trust caused by a failure to obtain informed consent to remove and keep her heart during autopsy has reopened wounds that had begun to heal, inasmuch as they ever do.

What is it about medical decision-making that makes the nurturing of trust so difficult? Why do we continually see examples of decisions being made without the process of informed consent being respected? Does an emphasis on the scientific or the biological automatically preclude a sense of shared humanity between the doctor and his or her patient? Does a heavy workload inevitably mean there is little or no room to be aware of the patient as a person? Does a powerful technological imperative imply that the end justifies any means?

When trust is betrayed, whether by an institution such as medicine or an individual within this institution, the patient and their family are left with a profound sense of vulnerability. Inevitably such a betrayal strikes at the core of the doctor-patient relationship and weakens the culture of care.

Rev Michael McCabe PhD
Director
The Nathaniel Centre