Looking Beyond the Guidelines: Palliative Care, Families and Informed Consent

by Dr. Nileema Conlon Vaswani in

Guidelines of good practice are undoubtedly necessary and exist for the primary purpose of protecting the patient. Doctors who adhere to these guidelines would also protect themselves from litigation and disciplinary proceedings. However, there are times when difficult decisions do not find answers in guidelines. And it is on these occasions that we are forced to debate other moral questions.

It is unclear how precise the guidelines were regarding end of life decisions for neonates but this week's General Medical Council (GMC) hearing of Dr. Michael Munroe has brought this issue to light. He administered a massive overdose of pancuronium, a muscle relaxant, to two babies. He knew that this overdose would hasten their death. Notwithstanding concerns that his actions were "tantamount to euthanasia" the GMC is satisfied that he acted with the intention of relieving suffering rather than hastening death even though the hastening of death was a foreseeable side effect of the overdose.

Regardless of one's views on the moral permissibility of euthanasia, most of us would agree that pain ought to be minimised. But that wasn't the only vital element of this case. The role of the parents in such a situation is critically important as they serve as the decision-makers for their children. Dr. Munroe's actions, humane as they were, might have been morally different in the absence of parental consent.

An adult in a similar amount of pain would also want to have her suffering alleviated but, unlike a child, might be able to express this. A few years ago, I visited an old lady in hospital. It was clear that she did not have long to live. Her faculties were diminished and she had various medical problems. Notwithstanding some difficulties with communication because of her diminished faculties, one thing was clear: she was in tremendous pain and desperate to die. "I want to go. . . " she said. Her family knew exactly what that meant.

As is the case in most countries, in her country as well, euthanasia is illegal. However, I asked why she could not be given some pain relief. Every time she moved, she was writhing in pain. It was clear that some palliative (pain relieving) care would be welcome.

And it was here that the guidelines and policies were flashed before me. I was told that as far as possible, patients should not be given painkillers because they are "addictive". The junior doctor looking after the case would not dare contravene the guidelines. These guidelines meant that he also kept treating her with antibiotics for her chest infection, a treatment that would not help in the long run simply because there wasn't one. Finally, based on the distress of the family, she was administered an injection that alleviated some of her pain. She died the following day, as a result of her medical problems and age, not as a result of the pain-relief.

It is important to separate the debate on euthanasia from the issue of palliative care. Decisions regarding treatment at the end of life, not necessarily decisions to end life, are difficult to make. Often, as in the case of the lady described above, doctors who act with the intention of promoting the best interests of the patient by acting within the guidelines given to them, end up doing just the opposite. Dr. Munroe might not have had clear guidance on end of life issues regarding neonates but administering a dose of pancuronium that was twenty-three times the normal amount would almost certainly have breached the guidelines. If Dr Munroe had not administered this pain-relief, and remained with the normal dose, the babies would have continued to suffer and the parents would have been distressed at the prolong suffering. Honouring the guidelines would have brought distress to both patient and family, as was the case with the example of the lady.

The reason why administering an overdose of pain-relief is separate from euthanasia is because death was inevitable for the babies. Treatment had already been withdrawn, an act that could raise moral questions, but not ones that pertain to Dr. Munroe's case at the GMC. A debate about euthanasia would be appropriate if one wanted to debate the moral permissibility of withdrawing treatment but once that was done, the additional act of alleviating suffering, even if it resulted in death was not an issue about euthanasia but one of palliative care. The babies' parents had already said "goodbye" so to prolong the suffering of their children would have been less than humane.

It seems ironic that parents who consented to the pancuronium being given to alleviate the children's suffering should have the decision challenged by an external body. Although the decision that was challenged was technically Dr. Munroe's, it was a decision that was arrived at with parental approval and consent. In most cases, parents act in the best interests of their children. For parents to reach the point where they not only consent to withdrawal of care but also consent to an overdose of pancuronium means that they believed that their children were undergoing a great deal of suffering. For anyone to challenge that, even if it is in breach of guidelines, undermines the role of parental consent and the distress that the parents were undergoing at watching the babies suffer.

When doctors are disciplined or have their professional competence called into question, it is usually done so with the intention of protecting patients. However, punishing an act of humanity, an act carried out to relieve suffering, not to end life, ought not to be challenged, particularly if it rides on the back of parental consent. Although this case has sparked a debate about euthanasia, it is really the issues of proxy decision-making and palliative care that deserve moral consideration.