Axe of Compassion

Charlotte Wyatt’s doctors and parents were united in wanting the
best for her, but beyond that, they couldn’t agree. Charlotte
approached her first birthday having never left hospital. A
premature baby, she was profoundly disabled and, said the medical
staff, in frequent pain. While her doctors wanted to call a halt to
aggressive life support measures, her parents refused to give up
hope. In the high court, the judge ruled in favour of the
doctors.

It is rare for such choices to be made in a courtroom, but it is a
common occurrence for specialist doctors such as Neil McIntosh, a
consultant neonatologist at Edinburgh Royal Infirmary. “We are
deciding these things on almost a weekly basis in our regional
centres,” he says.

His career in caring for premature babies has spanned three
decades. During that time, technology has changed but the ethical
dilemmas have not. As a junior doctor, McIntosh was fighting to
save babies born at 28 weeks’ gestation, “and asking myself whether
I was doing the right thing”.

Advances in neonatology have since extended the threshold of
viability outside the womb to babies born at 23 weeks (a full-term
pregnancy lasts 40 weeks), but that central question remains the
same.

Doctors must consider not only their own clinical experience but
also a growing body of research evidence that links very premature
birth with increased disability later in life for the few babies
who survive. One of these studies, called EpiCure, was recently
featured on BBC One’s Panorama, and shows that babies born very
prematurely face tough odds.

The EpiCure study started in 1995 and followed up 4,004 babies born
at less than 26 weeks’ gestation over a 10-month period in the UK
and the Republic of Ireland. Only 314 babies survived to be
discharged from hospital.

As these children have grown older, the researchers have reported
on their progress through publications in medical journals. At two
and a half years of age, one in four of the surviving children had
some form of disability and a further one in four experienced
severe disabilities.

Panorama gained access to some of the latest EpiCure data, which
are yet to be published. The programme reported that 40 per cent of
the EpiCure children had cognitive difficulties in their early
school years, compared with 2 per cent of their peers in the
general population.

Parents need this kind of information to help make decisions for
their child but may find it hard to take in, says Bonnie Green,
head of professional and public affairs at premature baby charity
Bliss.

“It’s very difficult for parents to weigh up those statistics and
understand what they have been told in relation to what may be the
lifelong effects,” she says. “They have already gone through the
traumatic experience of having a premature baby. It often makes it
doubly difficult if they then have to work with paediatricians to
make a life and death decision.”

It is an appalling situation for shell-shocked parents, says
McIntosh. “What parents need from my perspective is some realism.
They need to know that at 23 weeks we do save the occasional baby
and some of those babies will be normal, but that’s not the common
outcome. I’ve been fighting for newborn babies for 30 years and I
think that gives me a certain realism about the
possibilities.”

When advising parents, doctors can turn to ethical guidance from
various professional bodies. The British Medical Association and
the General Medical Council have published advice on end-of-life
issues for patients of all ages.

The Royal College of Paediatrics and Child Health has also recently
updated its framework for professional practice, called Withholding
or Withdrawing Life-sustaining Treatment, which is pertinent at all
stages of childhood, from newborn to adolescent.

The paediatric framework states that all health care professionals
have a duty to work in partnership with parents, acting in the best
interests of the child. It spells out circumstances in which
life-sustaining treatment will not restore health or bring other
benefits, and where it may be ethical and legal to withdraw such
treatment. These cases include:

•  Brain-stem death, where heart and lungs can be kept working
  only through artificial means.
•  Permanent vegetative state, where brain damage makes the child
  reliant on others for all care and does not react or relate to the
  outside world.
• The “no chance” situation, where life-sustaining treatment
  simply delays death without significant alleviation of
  suffering.
• The “no purpose” situation, where the patient may survive but
  with so great a degree of physical or mental impairment that it
  would be unreasonable to expect the child to bear it.
• The “unbearable situation”, where the child or the family feel
  further treatment would be more than they could bear, in the face
  of progressive and irreversible illness.

  This framework emphasises the importance of treating each child as
  an individual case, a view that is widely agreed.

  “It’s very important that we never forget the uniqueness of every
  child and its situation,” says Jo Williams, chief executive of
  learning difficulties charity Mencap. She adds that the
  organisation’s “starting point is very much that children with a
  disability should have the same rights and opportunities as every
  other child to life and to a quality of life”.

  It is that phrase – quality of life – which marks the edge of a
  very grey area. How can we know when a person’s life has “no
  purpose” or is “unbearable”, especially when they are unable to
  speak for themselves?

  “We know from disabled people – including very severely disabled
  people who are cognitively competent – that their own view of their
  quality of life is sometimes very different from the view of other
  people,” says Liz Sayce, director of policy at the Disability
  Rights Commission. “It’s about that assumption. Who can decide what
  quality of life is?”

  Doctors “talk more about the balance between benefit and harm of
  treatment because quality of life is a very subjective thing”, says
  Michael Wilks, chair of the BMA’s medical ethics committee.
  “Doctors are not really entitled in my view to make a decision
  about someone’s quality of life. The only person who is entitled to
  make that judgement is the patient.”

  Wilks also suspects there is an unspoken cost agenda. “People may
  not be articulating this explicitly but there is a question about
  how much the NHS is going to spend on looking after a child with
  that condition set against the opportunities for other people to
  have other forms of treatment on the NHS. While these are very
  uncomfortable questions I think they are valid areas of
  debate.”

  A new initiative from the Nuffield Institute of Bioethics will
  bring these issues under close scrutiny. The institute is launching
  a consultation on prolonging life in the newborn, which will report
  in 2006. Health care professionals, ethicists and charities will
  come together to discuss latest research and practice, and issues
  such as legal requirements and support for families.

  In the meantime, more parents like the Wyatts will continue to
  battle to save their child’s life at any cost.