Public asked on sick babies' care

Medical advances mean more babies born prematurely survive

The public is being encouraged to have a say on when doctors should step in to try to prolong the lives of critically ill babies.

Medical advances mean more babies born prematurely are surviving - which means more tough decisions about how, or whether, to continue with treatment.

The Nuffield Council on Bioethics wants to gauge public opinion on these complex ethical and legal issues.

The consultation closes in June. The council will report by the end of 2006.

Tough decisions

It is hoped the findings will help healthcare professionals and parents faced with such dilemmas reach decisions together rather than battling it out in the courts.

The council's working party includes experts in ethics, law and medicine, patient groups and charities.

It will look at issues raised when making care decisions about foetuses beyond the first 12 weeks of pregnancy and very young babies during the first 28 days of life after birth.

We know that for many people this is an upsetting subject Professor Margaret Brazier, chairwoman of the working party

The party will also consider the consequences, for the infants and children who survive, of decisions made to prolong life in the newborn period.

Professor Margaret Brazier of Manchester University School of Law, who is chairwoman of the party, said: "We know that for many people, especially those with first hand experience, this is an upsetting subject.

"Nevertheless, we would like to encourage responses from both individuals and organisations."

She said responses could be submitted online at the council's website.

Julia Millington, of ProLife Alliance, welcomed the opportunity for a large public consultation on these matters.

"Whilst we are not in favour of seriously premature infants being subjected to burdensome and painful treatment, we nevertheless prefer that neonatologists err on the side of caution when making these life and death decisions."

A spokesman from Life said all children, born and unborn, deserved the same equality of care as every other human being.

'Difficult time'

The Linacre Centre for Healthcare Ethics said it hoped the report would recommend withholding treatment only for "the right reasons", such as when a treatment's benefits were too limited to justify its burdens.

"Treatment should never be withheld with the intention of ending a life we think is 'worthless'. Life always has value for everyone, disabled and able-bodied alike," said director Dr Helen Watt.

Bonnie Green from the premature baby charity BLISS, who is a member of the council's working party, said: "Every pregnancy and every baby is individual...

"The difficult issues surrounding continuing or withdrawing care whether for an extremely premature baby or a full-term baby who is very poorly should be made on an individual basis involving both parents and the medical team.

"We know from recent research that babies born very early (at 24 or 25 weeks gestation) who survive have an increased risk of disability or developmental delay but also that some will go on to lead full and healthy lives.

"This is a really difficult time for parents, who often will want everything done for their baby. The increasing knowledge from research about survival and long-term outcomes should help parents towards this decision."

Professor Neil Marlow, neonatologist at Nottingham's Queen's Medical Centre and member of the council's working party, said it would be helpful to have some framework on which to base decisions.

Fellow party member Professor Alastair Campbell, a professor of ethics at Bristol University, emphasised that each individual case would still need to be judged in its own right and that the report should not be seen as strict guidelines.

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Your comments

Although I would find it impossible to put myself in the position of these distraught parents, I know as a medical student, I will one day find myself in the horrible position of deciding if it may be time to let a patient die. If the damage is irreversible, and only prolonging the torture of life, is it not better to let the child/adult die peacefully, then live a life in pain? Saying that, you can never see into the future, and know if the patient would make a miraculous recovery.
Rupa, Herts, UK

I appreciate the comments from Amy, and feel that they point to a further dilemma. We are all involved in such a decision, because resources are limited and we cannot benefit one type of patient without withholding resources from another. The value that we attach to a Premmie baby will differ not only between individual people, but also as a result of their exposure to the child in question (by being a parent, for example), and to other serious conditions that require the same resources that are proposed to be invested in the baby's survival.

That is why I think it is a good approach to invite any member of the public to submit their own values to the commission, and yet it is also a good decision by Prof Campbell to take each individual case separately. This is one of those situations of irreducible injustice to one side or another, and therefore the debate will run as long as humans are human, or until we find a way of accessing unlimited resources.
Tom, London

I'm also a mother but I can assure you that if any of the many tests I took during my pregnancy had shown any defect which would have meant a life of misery for my child then she wouldn't be here today. I speak as the sister of a child who was born with problems so serious that my parents have given over their lives to looking after him, almost bankrupted themselves paying for care and who were forced to neglect their other children in order to meet his needs. Life is precious, so let's not undermine that value by forcing babies to spend months being kept alive by machines and poked and prodded at every opportunity in order to satisfy our own selfish desires, when they have no real chance of surviving anyway.
Jennifer, Netherlands, ex-UK

Parents should have the final decision over treatment, same as for any child. If parents want to continue, it is their child and their choice, no one else's. No doctor will ever know a child better than the parents, so they should not play God with people's lives. And especially not with someone who hasn't the ability to voice their own opinion.
Rachel, Bath, UK

It seems strange following this debate after losing my son who had Cerebral Palsy caused by a birth injury. He died from an infection which caused all his bodily systems to fail. We were at his side as he died and I got an amazing peace from the experience.As parents, we have struggled with the big questions with enormous help from our local Children's Hospice. By the way, they get less than 2% of their funding from the government where the adult hospice get over 20%. I thought we cared for children in this country. No we just care for ourselves. It is cruel to keep a person alive only for our benefit. If the child is suffering and you love them, let them go. If you keep them alive, you are doing it for you not your child. This was a painful lesson to learn but we learnt it.
James, Essex, UK

My first pregnancy ended in an emergency C-Section and my son was born at 28 weeks. He was in neonatal care for over 6 weeks. Fortunately, with the specialist care he received he has grown on to become a wonderful, caring, healthy 5 year-old. He has no problems and is fitter and healthier than most boys his age. I am extremely proud of him, and I know very well that things could have been very different had he not received such good care. I would like to reinforce Amy's message that you really have not got any idea unless you have gone through the trauma yourself. Everyone has the right to live.
Rayhela, London Colney, UK

As a mum of a premmie who was 7 weeks early the care and understanding of the medical team helping her was far superior than anything else I could imagine. It is an impossible position to be in - you want your child to be ok and have a healthy life and then you must step back and think of the long term effects to the baby you can only take advice from the doctors as at the end of the day you will be the carers. Quality of life has to be considered - I was lucky in a way as my baby was early but ok - although she died at 4 months old from cot death - so I can understand the hardship that parents go through if a decision they need to make is not the easiest
Pauline, UK

Re Amy: not to split hairs, but these decisions are not (should not) taken by junior doctors, it is taken by the medical team as a whole, with guidance from all those concerned with treatment, including all doctors involved and their allied professions, eg physios. There are also guidance bodies such as the medical defence union, the general medical council and the British medical association. also in your note, you said "premature babies have a right to life.... their fate should not be decided by anybody...the baby decides if it has the will...to carry on the fight". surely this included medics offering medical treatment, as well as medics witholding such help.
Ed,Bangor

As the father of twins who were born prematurely I feel that the essential question at the heart of this study does need to be asked. In the early days following our twins' birth, we were faced with a thousand questions, some of which only we could answer. My partner and I discussed the issue of "quality of life" over survival at any cost. We both knew that if the medical teams had told us that either or both of our children would not enjoy a self-sustainable and pain-free life, we would have acted in the child's interests over and above our need to be parents. We have learnt that life, in its earliest stages, carries no guarantees and is incredibly fragile, and most importantly we've learnt that you need the courage and the love to know when to let go.
Martin, England

My son was born at 36 weeks and although not considered very premature he was in intensive care for three weeks, whilst he was there I met a number of parents who had babies born at 26 or 28 weeks. They treated their babies the same way I did and would sit by incubators and talk to them for hours because they are parents who love their children. I was encouraged by my boss telling me that his son, born at 28 weeks and very poorly, is now 11 and healthy. Although the road to his recovery was a long one they never gave up hope. My own son has mild Cerebral Palsy but I wouldn't change a thing about him and to me he is perfect. It is very easy to imagine how you would deal with a situation until you are faced with it. The reality is often very different.
Sarah, Birmingham, England

The medical advances in the last 40 years have placed those in the west in a position to be able to ask the question of do we spend time and resources helping premature children live. I don't think that anyone would willingly want a parent to endure the suffering that loosing a child causes.

It should also be remembered that many parents in the many parts of the world do not have access to new medical technologies and all children have a far lower chance of reaching adulthood than they do in the UK and the west.

It is not a call that I would want to make, however, in the final analysis the decision will probably be made on the basis of cost - and whether it is economically viable to keep that child alive or to let them die.
Nick, Southampton

The suggestion that she should have had her medical assistance withdrawn when she was at her darkest hours sickens me Paul, Stockport, England

My daughter was born at 24 weeks and weighed just over 1lb. She spent 4 months in intensive care and we were warned many times that if she survived, which many times it looked unlikely she would, then there was a good chance she would have a disability of some sort. As her parents we accepted this as long as she survived and it is due to the skill, care and dedication of all the staff at the premature baby ward that my daughter is a perfectly normal 7 year old who is in some respects in advance of her full term peers. As you can imagine the suggestion that she should have had her medical assistance withdrawn when she was at her darkest hours sickens me.
Paul, Stockport, England

Those with no ability to speak for themselves must be represented. The choice of who should represent them in this consultation is hard. I would hope that this decision is mostly left up to parents and medical teams, to decide within pre-arranged guidelines. I just hope that these guidelines are administered with the best interests of the child, as decided by purely ethical arguments (which have been made public) and is kept free of politicisation and society's current religious beliefs. After all, who can guess what religion, if any, that child would choose to follow?
Will, medical student, UK

I am glad that the correspondent above does not work in my son's special school. Fortunately, those who work there do not presume that my son's life is not worth living. He was not premature but yes has anomalies in his brain. Yes, he might need long-term care but in society we should seek to cater for everyone's needs. And one day your correspondent or a member of her family may themselves be in need of that care - disability does not discriminate.

The decisions on medical intervention for critically ill babies should be taken by the parents, in consultation with medical staff. But it is not easy to make an accurate prognosis of that baby's future life. Bear in mind also that many "brain damaged" children in need of long term care for their mental disabilities - like my son - have never been critically ill; rather it is a diagnosis that creeps up insidiously as the child grows yet does not develop according to the norm. How does one then address these children?
Natasha, London, UK

I think there are some important points that haven't been made yet - that even a profoundly disabled person can have a perfectly good and fulfilling life, with the right support, for one. I have a sister who was born as an extremely premature baby who is now a high-achieving young woman - she'll be 18 this year.

Doctors aren't good at predicting outcomes even just medically, and when it strays into the social - "how good could this child's life be?" well, it's just not their area of expertise. They don't know, they can't tell, and they view anything other than a physically and intellectually 'normal' child as a failure. That's terribly dangerous.

Instead of someone making some arbitrary decision about which babies should get a chance at life and which should not, the concentration should be on improving access to proper support services, earlier, on enabling children to go to their local mainstream school, on supporting the parents of the most profoundly disabled children with caring for them at home so that nobody feels it necessary to send vulnerable kids away to boarding school or some other respite.
Rebecca Young, Manchester, UK

Having had my own premature child in hospital for 6 months following his birth at 25 weeks gestation I can say that it is a hard road to travel. My son remained oxygen dependent due to chronic lung disease until he was almost 16 months, suffered a bilateral grade 3 Intraventricular haemorrhage and there were many times we were told he would not make it. The final decision I believe should lay with parents. Ask a doctor to put themselves in the same situation and ask "If this was your child what would you do" and I believe the medical profession would see each child's situation as more personal rather than as a number taking up precious space in a neonatal intensive care unit or a potential court case. Everybody of course wants their child to survive. When the final decision is taken out of parents hands and handed over instead to the child's doctors, its a grave and horribly frightening situation, and one that I hope never happens.
Shelley, Boston, Lincs UK

Whenever a baby is born either prematurely or with severe problems it is a very difficult choice whether to use evasive methods to keep the child alive or to leave it to nature to decide. Parents of the child will always push to keep their baby alive regardless of the severity of their illness or the suffering it causes because they love their baby and want it to survive. In most cases babies survive and are perfectly healthy, but some are left so damaged that they have no quality of life. It is these cases I think we need to address.

Doctors have been given a very hard time recently in several high profile cases where they did not wish to prolong the child's life because the child was so damaged that it was causing undue suffering and would have no quality of life if it did survive. People that work with these babies love and care for them, but can look at the situation realistically, without the blind love that the parents all have for their children.
Mrs C Murphy, Kent

This is a very topical subject in the Netherlands, where minimal effort is given to babies born before 28 weeks. The question is really, would the baby survive if nature took its course? Re older/ill people, my own father was brought back life (died peacefully in his sleep, time of death unknown, but 30 minutes to resuscitate). We turned the machines off & his remaining time & eventual re-death were not peaceful. Is this what we actually want?
Sarah, The Netherlands

This type of decision will never be clear cut right or wrong, neither will it ever be an easy one to make Nicola, Bucks

No parent or soon to be parent would want their child to suffer needlessly. I'm a parent of four children who have all thankfully been born healthy. However if they were born prematurely and needed constant medical intervention to live I would have to question myself as to who the treatment was really helping. Would it be in the baby's long term best interests or would it be that I would be too distraught at the thought of losing a much loved child before having the privilege of knowing them? Society today shelters us all from the loss of loved ones, but sadly loss does happen. Doctors and nurses can take a non-emotional based decision as to whether treatment could and should continue. This type of decision will never be clear cut right or wrong, neither will it ever be an easy one to make.
Nicola, Bucks

As a Mother my first thought would be to do all that is possible to keep a baby/child alive, but I have also worked in a special school with very ill children and children that would never be able to live without 100% care. Seeing those children and hearing what their parents have said, the very ill with brain damage and no chance of a good life should be left for God to decide.
Gill, Stevenage

Being a parent myself, I can safely say that the decision to maintain treatment for critically ill babies and premature babies should be made primarily by parents, under the guidance of the medical team. Parents need the assistance in weighing up the risks of trying to keep their baby alive. They also need a lot of support from everyone in upholding their decision.
S. Leader, Lightwater, UK.

All babies have a right to live. Just because they are new born and ill, isn't a reason for ending their short life. I suspect that decisions to withhold treatment is because of financial and not medical reasons in many cases.
Brian Hapgood, London, England

I'd just like to say how can the parents possibly decide the fate of their child, of course they want their child to say alive. They would probably not fully understand medical implications etc. Parents and doctors should help to chose together.
Sophie Richards, Fleet, Hampshire

If a baby is born prematurely, that needs minimal help, then that would be the limit, however it would be difficult to put a time limit on it, as I'm sure there are some strong little fighters out there. Let's face it the world is over populated as it is - we are the culprits - 100 years ago, the elderly died when they needed to - they weren't put on life support systems, given drugs etc - same applies to premature babies. We really need to stop, and take a good look at what we are doing to this world.
Julanne, Gloucester

I am outraged by the comments above and feel I must write and give true perspective, having had a premmie baby almost 4 years ago and he sadly died but only after 6 months of fighting!

Medical knowledge has advanced even over the 30 odd years since my birth and this is clearly an advantage to all concerned. Premmie baby's have the right to life and much as the next person and their fate should not be decided by anybody, the baby decides if it has the will and the strength to carry on the fight.

Parents can take advice from the doctors and everything is explained in great detail and nothing is left unclear Personally speaking I know more medical terms about premature babies than most junior doctors. I know the questions to ask and understand fully the responses they give and I am not a Doctor.

If you were ill and needed heart surgery or other medical help, would you expect to be told by doctor and surgeons, no I'm sorry you are too old, too young etc. NO. Don't make comments unless you have experience in the situation to understand exactly what you are saying.
Amy, UK

In response to Amy's comments, it is not simply up to the baby - if we have the technology to prolong life if there is a chance of meaningful recovery, then it is up to us, the doctors etc to do so. Likewise, if using technology will only prolong the babies life of suffering, then it is up to us to decide whether or not to prolong that suffering. To simply leave a baby to fight to the end, if it is clear the end will come soon, is cruel as far as I'm concerned.
Jenny, Edinburgh

In response to Julanne from Gloucester who recommends controlling the world's population by letting the weak die - I sincerely hope that you never become ill, frail, old or disabled if someone with your mindset holds power in Government.
Orla, UK

Julanne has a point, in that there is a finite amount of resources for the NHS, and the one of difficulties we have at the moment is that emotive cases (like premature babies) get priority, and so ultimately money is diverted from other possibilities (such as an extended public health information programme, employing more nurses or even paying them better, etc). There isn't a single answer to these conflicts. And in the end, somebody has to make a decision, because that's their job.

I have a lot of sympathy for parents who want to fight for their child's life, and I also have equal sympathy for the doctors and decision makers who have to balance their skills and the potential capability of modern technology with their bigger role of serving the whole population. Who will support the person who actually makes the hard choice between a budget, a life and the emotional welfare of medical staff? I don't see politicians giving this support, but that is really their job.
James, UK