In 1975 and 1976 I worked as a junior hospital doctor in a children’s hospital in South London.
Once upon a time, in 1975, Simon (not his real name) was born with congenital biliary atresia. Liver damage meant that he would not see five years of age, and surgery at that time was ‘experimental’. Simon had repeated operations. I enter the scene in April 1976, a fairly newly qualified doctor, right at the bottom of the medical hierarchy. I am the first on-call doctor to carry out the consultant’s wishes during the day. I perform hands-on procedures such as intravenous drug administration. I am on call for two out of every three nights and weekends, at which times I am the only doctor in the hospital. Simon requires attention, often lengthy, during the small hours most nights. He has drips inserted into scalp veins. These frequently become displaced or blocked, causing swelling, inflammation and infection. It is my job to re-insert the drips into one of the increasingly few veins available. Simon is jaundiced, conscious and whimpering while this is going on. The memory of his large eyes looking at me as I am causing him pain is with me 37 years later.
During the next few months Simon has two further abdominal operations, a total of five so far. Sotto voce discussions during ward rounds acknowledge that Simon will die, but that perhaps another operation should be attempted. Face-to-face discussions with parents (Simon is their first child) are less realistic, or more upbeat, depending on your viewpoint. His parents are perplexed, distressed and uncertain. After the last operation I say to the consultant—remember I am the lowest of the low on the medical food-chain, ‘wouldn’t it be best for him and his parents if he were allowed to die with as much dignity as we can provide and he can muster?’ I am ridiculed and condemned for my views. My reasoning that this would have allowed his parents to begin to pick up their lives, grieving as necessary, and try for another child, is simply not heard. Simon undergoes hepatic surgery for the sixth time. A few days after this, Simon dies about 20 months old. This story is accurate inasmuch as my memory is reliable, long-forgotten details surfacing as I type.
Here are some of the issues raised by this story:
- Best interests? Whose? Simon, parents, society, doctor?
- How is unnecessary surgery justified? How can we know it’s unnecessary until it’s been tried?
- To what extent do doctors put the needs of research and career advancement before those of patients?
- Practising surgical techniques on babies for the possible benefit of those in the future.
- My advocacy of allowing the child to die could be interpreted as advocacy of killing (Dr Leonard Arthur at Derby in 1981).
- The effects of illness on the family, and the role of the medical profession in prolonging this.
- Difficult treatment and practical procedures being in the hands of the least qualified (me).
- The effect on me of being left to deal with Simon and his parents, especially at night.
- The role of managers and senior medics in not providing adequate training and support.
- The expense to the community of keeping alive, and providing expensive surgery for, those with no prospect of even medium-term survival.
- Giving information to relatives: the balance between providing hope—that is, probably telling lies, or giving straight facts.
Was it arrogant and presumptuous, evil even, of me to want to leave Simon to God, or nature if you prefer, with only compassionate care? Was it selfish of me to want fewer disturbances at night? As a result of Simon’s needs, I was less well-rested for other patients. Is it appropriate that Simon’s parents were not consulted but were told what would happen to him? The relationship between the ‘healer’ and the sick should be open and honest. In this case, it was not. I was constrained by the instructions of bosses and did not have the courage to disobey them. I was feeling, though not acting, as if I alone knew the mind of God.
How do we weigh the needs of the individual against those of community and colleagues? We have to make judgements, although to do so today is often condemned: ‘to defend distinctions of value … is to offend against the only value-judgement that is widely accepted, the judgement that judgements are wrong’ (Roger Scruton).