Last week OSFL hosted Professor John Wyatt, a professor of ethics and perinatology at UCL, who worked for more than 20 years as a consultant neonatologist at University College Hospital. The talk was full of fascinating insights from a career spent caring for newborns as young as 22 weeks, and the minefield of ethical dilemmas that naturally occur when dealing with such fragile human life. Here are five things we learnt from his talk:
1) Neonatology is a high tech world and the technology is always improving.
It is incredible to see how many preterm newborns are surviving from as young as 23 weeks
and that of those who do survive, a very large proportion suffer little or no impairment. The study below shows that in 2006 90% of babies born at 26 weeks suffered no impairment later in life.
2) The prediction about a future “quality of life” is often highly inaccurate and subjective.
The very concept of a ‘quality of life’ is entirely subjective and so judgments will tend to reflect the prejudices and presuppositions of doctors and parents. The idea also assumes a form of biological determinism which is not supported by the evidence, and so the concept of a single variable called ‘quality of life’ is incoherent. Any one life has multiple dimensions of experience that are impossible to quantify and summarize with a single number, such as motor function, sensory function, cognitive function, creative abilities, relational experiences and family bonds, social resources, mood and affective experiences, and many others besides.
One study asked a whole range of disabled adolescents to rate the value of their lives, then they asked the parents to rate the value of their disabled adolescents’ lives, and finally they asked the pediatricians to do the same. The research showed that the disabled people put the value of their lives the highest, the parents put it somewhere in the middle, and the pediatricians put it the lowest.
Clinicians tend to assume that a biological impairment such as impaired neuromotor function translates automatically into a loss of well-being or life-satisfaction. As a result they tend to be blinded to the effects of social, economic and political factors in the lives of disabled children and adults. The problems of living and coping with disability may be as much a consequence of poor social attitudes and the lack of aids, resources and support, as the medical impairment itself.
3) Everybody is coming from somewhere
When discussing these highly complex ethical questions, it is important to bear in mind that no one approaches the question from an entirely neutral perspective, but that everyone is coming from somewhere.
This is particularly important with respect to the relationship between parents and healthcare professionals. The ideal is that the relationship is seen as “expert-expert”, based on the mutual respect for the differing expertise of the parties. Healthcare professionals of course bring expertise on the level of technical proficiency, but should also make sure to include humanity, compassion, wisdom, and ethical integrity.
4) A way to help with difficult decisions about whether or not to withdraw life support: balance the benefits and burdens of treatment
It is painfully difficult making decisions about when it is appropriate to withdraw life support from a newborn, but the most helpful way to look at it is to balance the benefits and the burdens of the treatment. As soon as the burdens outweigh the benefits, the treatment becomes abusive and there is a legitimate reason to withdraw them.
We must also bear in mind the key ethical distinction between withdrawing treatment and euthanasia: intention. Withdrawing treatment does not have the intention of death, whereas euthanasia does. Intentions matter in a moral universe, and are central to the legal analysis of actions, so should be carefully considered in the ethical implications of actions.
5) Neonatal care is a way of saying to these tiny little beings: “it’s good that you exist, it’s good that you’re in the world”.
Caring for these vulnerable newborns is a profound and rewarding experience. Even when intensive support is withdrawn, it is vital that care continues, in the form of food and fluids, pain relief, and tender loving care.
Allowing a baby to die at peace, with symptoms controlled and in his or her parents’ arms, can be as much a triumph of neonatal care as when the child recovers and goes home.
If you would like to read more about Professor John Wyatt and his work as a neonatologist, consider buying his book, Matters of Life and Death.