Deakin: A Deakin University law academic has questioned if we are doing the
right thing by saving the lives of extremely premature babies. In a new book based on research conducted for her PhD, Deakin Law School academic Dr Neera
Bhatia explores the legal and ethical issues surrounding decisions to withdraw
or withhold life-sustaining treatment for babies born on the edge of viability
(23 weeks) and addresses the controversial question, are some lives too
expensive to treat?
"Just because we can save these babies born at 23 weeks, does it mean
we should, knowing that finite public resources could be spent on other
patients, children and even babies born at a later gestational period and are
likely to make a greater health improvement?" Dr Bhatia asked.
"The main premise of my book is that the allocation of finite
healthcare resources should be a serious consideration in end of life decision
making for this select group of patients. With an ageing population and limited
healthcare funds these difficult questions need to be asked and answered.
"I am not saying exclusively that these babies should be not kept alive,
rather I am asking if we are doing the right thing by saving babies that are
going to require a lifetime of ongoing health care given the fact that we have
many competing priorities putting pressure on limited health care budgets."
Despite rapid advancements in technology and medical science allowing
extremely premature babies to be 'saved' from death they are still
overwhelmingly subject to severe disability, Dr Bhatia explained.
"We are able to save babies from death but not yet from disability," Dr
Bhatia said.
"Medical research and empirical studies support this contention. A
number of reports and studies, such as the EPICure
studies conducted in the UK in 1995 and 2006, illustrate that we are saving
them but they are suffering very severe disability. Those born at the 23 weeks
are most likely to suffer cerebral palsy, have mobility issues, blindness and
deafness in addition to intellectual impairment."
Dr Bhatia understands that talk about withdrawing or withholding
live-sustaining treatment is a very polarising issue, especially when children
are involved. However, she believes that we need to start an open and honest
discussion on this topic.
"These are hard and very uncomfortable discussions to have but
necessary. In western developed countries such as the UK and Australia medical
practitioners are now able to keep extremely premature babies alive, but
unfortunately cannot protect them from disability and lifelong poor health outcomes
and the ongoing costs and impact on the families caring for these children," Dr
Bhatia said.
"Some will disagree with my contention, some will agree and others will
say they share the same opinion but would never say it out loud – perhaps this
is to be expected given that talking about putting a 'price' or 'value' on life
is so taboo in society.
"But the reality remains that end of life decisions need to be made in
some circumstances and should be made on more rational grounds by attempting to
put some of the associated emotion aside. What I am suggesting, and it is a
suggestion, is that end of life decisions for impaired and extremely premature
infants should be driven by a more objective, transparent and tangible
approach. In this regard, resource allocation and quality of life should be
important considerations.
"In the book I argue that at the very least such end of life decisions
should be guided by a better authoritative legislative framework. While I am
not suggesting introducing specific laws on this issue, some guidance or
framework is required."
By starting a conversation on this contentious issue, Dr Bhatia hopes
that eventually end of life decisions would not be such a shocking
consideration when the issues do arise.
"End of life
decisions for critically impaired infants are generally made by consultation
between doctors and the parents and in rare circumstances with the intervention
of the courts. However more open discussion about how finite resources are
allocated and the corresponding quality of life for extremely premature babies
would potentially lead to more sound policies and decisions that also have the
interests of wider society in mind," Dr Bhatia said.
"Unfortunately,
with limited health care budgets these hard questions have to be asked. While
saving tiny babies from death may be considered by some as a moral duty or a
benevolent act, we do not have limitless healthcare resources to provide these
infants with the lifelong care and support that they require."
'Critically Impaired Infants and End of Life
Decision Making – Resource Allocation and Difficult Decisions', is published
by Routledge Cavendish and available now.