Doctors – Heroes or Villians?

Categories: Opinion.

As the doctor on a small palliative care team of two, in a country where paediatric palliative care is in its infancy, I was called to see a 6 year old boy with advanced glioblastoma. He was lying in a very busy and full ward in a regional hospital having been down referred from the local neurosurgery unit with ‘there is nothing more we can do’. This busy peripheral hospital didn’t know what to do with him or how to manage him further. 

The junior doctor on call asked the family to come in to see me. The child was unconscious and unresponsive from the time of brain surgery to debulk the tumour, 2 months earlier. The mother, Thandiwe, was very sad. She spoke good English as a second language speaker. She related the history with ease and was devastated when we spoke about the fact that her child was not going to recover, that he would never wake up, that he was going to die. She had understood this before but somehow my presence made it that much more real. 

She never got to say goodbye
We admitted the child to our hospice as she was working and unable to care for him at home. He remained peaceful until he died 4 weeks later. During the time I spent with this mother I always felt there was something unsaid; something preventing our relationship being honest. After a few sessions I asked her what it was. It was then I started to understand the full depth of this mother’s anger and distrust of medical professionals. She said accusingly, ‘You are one of them. If I tell you how I feel about my son, about the things that worry me, you will defend them and even try to explain their actions. I cannot allow that.” We were quiet for some time. At last she asked me why they had operated on her child. Why, when they knew the prognosis was so poor from the MRI scan had they insisted on debulking the tumour. On the day of the operation, she had a dying but alert, communicative 6 year old. Surgery was complicated by an intracranial haemorrhage. He never woke up. During those last 3 months of his life he was still dying but unconscious. She never got to say goodbye.

What are the issues?
This case raises many issues. The health care system in South Africa frequently appears to be paternalistic in its approach to decision making. How honest are we with families and children about prognosis? Was consent for the surgery truly ‘informed’? Are we involving families and children in making decisions about their health and treatment? How do we create awareness of these issues and empower doctors to be courageous and compassionate in their approach to families where the choices are all bleak?

What if Thandiwe had been more involved? My sense is that if we were brave enough to talk honestly and openly with families like this and include the children in some of the decision making, the result would have been the same in terms of the severity of the diagnosis, but the last days could have been different. Thandiwe might have had the chance to say goodbye to her son. He could have been a part of that process and potentially help design his funeral. Instead we are left with a mother who does not know whether her son heard her say goodbye. Yes he “lived” longer than he would have done without surgery but what was his quality of life? What lasting memories will Thandiwe and the rest of the family have? 

Quality of life vs heroics
Health professionals need to be challenged to consider quality of life versus heroics. We love to pat ourselves on the back and say we save lives but do we always consider the cost? In this case, the cost of a mother not being able to say goodbye to her son? The cost of perform potentially futile surgery, while increasing the burden of the condition? The medical profession needs to question their own motives and acknowledge families’ rights to informed decision making, access to effective palliative care and their right to say no!

Dr Julia Ambler
The Bigshoes Foundation

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