I. THE CHILD FIRST AND ALWAYS?
When in or walking past Great Ormond Street Hospital, I notice its motto, “The Child First and Always”. Each time I feel both heartened and slightly uneasy. The reason for being heartened is obvious. It is wonderful to have a hospital that makes its commitment to care for children so explicit. The reasons for unease are slightly more complicated. What exactly does the motto mean? The “and” makes it sound as if there are two points: “the child first” and “the child always”. But “the child always” does not mean anything. So perhaps there is just one point: “the child always first”.
Of course it is in general such a good thing for a children’s hospital to put the interests of children first. But even after leaving aside pedantic worries about the wording, I am left with a slight unease. Does putting the child “always first” mean that no other people’s interests –those of other family members for instance- are ever allowed to count at all? While the general gist of the motto should be applauded, there are some questions to raise about making an absolute of the priority of the child’s interests.
1. PUTTING THE CHILD FIRST.
The revolution in the moral status of children is one piece of human progress in our time. We rightly aspire to show children the same respect that is shown to other human beings: to listen to them, to respect their autonomy where they are competent, and to treat their interests with the same seriousness as we would treat those of an adult. If a seven year-old child is in hospital, the medical care is just as important as it will be if he or she is in hospital again when grown up. And there may be reasons for showing even more concern for children. They may be less articulate in getting across their own needs or their own point of view, and they may also be more vulnerable, for instance to being traumatized by pain.
So, in general, the interests of children should not be taken less seriously than those of others, and sometimes more concern may be required. But does this mean that the interests of a child patient should always over-ride any other possibly conflicting interests? Or are there exceptions when their interests should be weighed against those of other people?
2. SOCIETY: OTHER PEOPLE.
One possible conflict is worth mentioning, even if only briefly. This is the issue of the allocation of scarce medical resources. An absolute principle of putting the child first, adopted across the NHS would give paediatrics total priority over all other parts of medicine. But children grow up, and they might come to regret the contrast between medical abundance in the earlier stages of life and medical shortages in the later stages. It can be seen as the job of the NHS to give priority to greatest need at whatever stage of life it arises rather than to operate an age bias.
Another version of this issue is closer to the bone. Is it justifiable to keep alive a baby with very poor prospects, knowing that this decision will be enormously consuming of scarce medical resources? (Or, suppose the parents want the child kept alive a bit longer to give them time to think through the question of withdrawing treatment, but this takes up a place in the Intensive Care Unit badly needed by another child? Sometimes there can be a question of which child first and always?)
I am pulled both ways on the resources issue. When I remember the Nazi posters advertising their poisonous eugenics programme, posters that showed struggling “Aryan” workers weighed down by the financial cost of horribly caricatured people with disabilities, my instinct is to say that money should be kept totally out of life and death decisions. This Nazi parallel makes me very uneasy about appeals to cost- effectiveness in justifying antenatal screening programmes, which pay for themselves because fewer children are born with severe conditions that need expensive treatment and support.
But, on the other hand, we all know that money inevitably enters many life and death medical decisions, if only because of the unavailability of treatment that the NHS cannot afford to provide. And, given that this is so, perhaps we ought to ask about which life-saving decisions are the most effective, however much this goes against our first intuitive responses? Probably most of us are pulled both ways here. I cannot discuss this fully today, but mention it as a possible constraint on “the child first and always”.
3. THE INTERESTS OF PARENTS AND OTHER FAMILY MEMBERS.
There may sometimes be cases where the interests of the child and those of parents or of other family members seem to pull in different directions.
Consider the case of a woman near the end of normal childbearing age, who has given birth to a child with a condition so serious that prolonging life is not a kindness. She may very strongly want a child and so support keeping the child alive at all costs. In this, her husband or partner may feel the same. Another version of the conflict is more a one of beliefs than of interests: the parents may find it goes against their religion to allow any child, however desperate his or her condition, to die.
Or the conflict may go the other way. A woman or a couple may be utterly overwhelmed by what they see as the devastation of their lives that will result from their child’s serious condition. This could be their reaction, even though there are reasons to think that most children with that condition are likely to have a good life. Or they may be concerned about the impact on the child’s brothers and sisters, either because of the huge financial cost of adequate support, or because of the likelihood that the child with the medical problem will demand so much attention and emotional support. (These brothers and sisters may be already in the family, or the parents may be thinking about future children they plan to have.)
How should we think about these cases where parents feel that they or their families will be unable to cope if a baby with a severe disability is kept alive? Sometimes this is criticized as being selfish, putting the desire to avoid difficulty and complication before the needs of the child. I believe that in general this criticism is unfair.
How things turn out depends a lot on the family context and on the degree and kind of disability. Some disabled people and their families cope brilliantly. Sometimes the other family members are enriched. A child who has a disability may give a lot to them and, in turn, may draw out of them things they did not know they had. But some disabilities are so devastating that the problems of parents cannot just be pushed aside.
Some parents have been open about the problems. One has written about her baby daughter.1 Imogen has permanent brain damage. When she was born, the placenta peeled away early, causing severe brain damage. Imogen has fits and will never walk or talk. She will need help with feeding. She will be in and out of hospital all her life. She cannot smile or make eye contact. She cannot communicate except by crying. Her expectation of life is about twenty years. Her mother has described the day she was told about Imogen’s brain damage and her resulting “special needs” and “profound learning difficulties”. She described carrying Imogen out of hospital, like the other mothers with babies in car seats: “But mine was carrying a time bomb, a terrifying future ticking away. We needed help.”
The mother also wrote about how limited and hard to get support is. The GP said the social services would help only if the baby was in danger. The special needs school costs £135,000 a year, for which some parents, after years of applying, get public support. The head teacher used the phrase “dump and run” to describe the way parents, unable to cope,
abandoned their children to the school. A social worker advised not thinking about the future. “But there it is, a gigantic future, where, for 20 years, I must nurse this baby in a horrible cloud of non-communication.”
Foster care was arranged for one weekend. She remembered her state after handing her daughter over. “In the car I weep, drowning in shame, the humiliation of not being able to look after my own child”. After the weekend the foster-carer said, “She’s not right, is she? Poor little thing, she must be in pain. My husband can’t stand the crying.”
Two thoughts come to mind. The first is that, when problems are as severe as this, no parent or family should be blamed if they fail to cope.
The other thought is about the criticism of “selfishness” when parents sometimes say they do not want their child with severe problems to be kept alive. (Of course, I have no knowledge of whether this was an issue in the particular case just mentioned, or what view this mother would have taken if it was. My comments here are about the general question of parental and family interests.) I have been talking in terms of a possible conflict of interest between a parent and a child. But, as Thomas Murray has pointed out, this may not be the right way of thinking about what is going on.2 Parenthood blurs the distinction between selfishness and altruism. If you hope not to hear someone say of your child, “She’s not right, is she? Poor little thing, she must be in pain”, is this selfish or altruistic? Or is it that we so much want our children to flourish, and care so much if they feel distress that cannot be alleviated, that it is no longer possible to separate parents’ interests from those of the child?
Should it be “the child –this child- first and always”, or should consequences for parents and other family members also be taken into consideration? The best answer may be more complex than the hospital motto suggests.