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Dilemmas of a Neonatologist Tom Stiris; MD, Phd, NICU, Oslo University Hospital, Norway

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Dilemmas of a Neonatologist

Tom Stiris; MD, Phd, NICU, Oslo University Hospital, Norway

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  Modern medicine has evolved rapidly the last

decade.

This has directed the neonatologist intodifferent scenarios of dilemmas.

Along with technological developments inneonatology there has been a continuingdebate about ethical issues

Dilemmas of a Neonatologist

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Dilemmas of a Neonatologist

To be or not to be that is

the question

William Shakespeare

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To start or not to start

To end or not to end

?

Dilemmas of a Neonatologist

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When to start, when to withhold ?

Treatment, do we do more harm than good? When is enough-enough?

Dilemmas of a Neonatologist

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A number of ethical theories and principles

are relevant.

Ethical considerations

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“All human life has worth and therefore it is wrong to take steps to end a person's life,directly or indirectly, no matter what the quality 

of that life.” 

Sanctity of Life Doctrine

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  Should life be preserved at all costs?

Is there no place for consideration of quality

of life?

Challenged

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  This distinction argues that there is a

difference between actively killing someoneand refraining from an action that may saveor preserve that person's life

Acts /omissions of distinction

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A translation of this would imply thatwithholding/withdrawing treatment isregarded as legal and regarded differentlythan actively killing.

This would be an important point in thediscussion between withholding/ withdrawingtreatment and euthanasia.

In many countries withholding/withdrawingtreatment would be accepted legally, howevereuthanasia will not be acceptable by the samelegal system.

Acts /omissions of distinction

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  The doctrine of double effect argues that

there is a moral distinction between actingwith the intention to bring about a person'sdeath and performing an act where death is aforeseen but unintended consequence.

Doctrine of Double Effect

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This is an important ethical principle veryoften used in palliative care and end of lifedecisions.

An example is the use of morphine to easepain and discomfort although we know thatin the end it may have fatal effect on the

respiration

Doctrine of Double Effect

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Guidelines recently published by theNorwegian authorities it states:◦ When life prolonging treatment has been

withdrawn, palliative treatment should be continued

or augmented.◦ The patient (neonate) must have adequate pain

relieve even if it cannot exclude hastening death

Doctrine of Double Effect

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  The principle for respect for autonomy

acknowledges the right of a patient to havecontrol over his or her own life, includingdecisions about how his/her life should end.

Respect for autonomy

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  For the neonate it would be decision in proxy,

meaning someone else will act in their bestinterest to make these decisions.

In most instances it would be the Parents,however health workers may also act in proxy

Respect for autonomy

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Is it so that a parent can demand treatmentwhere death is inevitable.

Deny a decision to stop treatment whencontinued treatment just prolong the deathproses.

Can parents deny treatment for their infantsor demand respirators turned off 

Respect for autonomy

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  A common belief is that a parent do NOT

have an absolute right to demand treatment,nor prolongation.

Respect for autonomy

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  An important question is whether the parent

always acts in the best interest of their childeven although they do belief so

Respect for autonomy

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  The duty of beneficence, that is to act in a

way that benefits the patient, is an importantethical principle in health care.

A duty to act in the patient's bestinterest-Beneficence

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The concept of nonmaleficence - anobligation not to inflict harm intentionally

How much harm caused by the treatmentneeds to be considered, as does thequestion of whether death itself is always aharm.

Many medical treatments may have harmful

side effects but save or improve lives.

A duty not to harm-Nonmaleficence

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Legal considerations

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Common dilemmas as in “end of lifedecision” 

However◦ These situations may be matter of there and then

decisions.

◦ The neonatologist will be very alone in the decisionmaking.

Initiation, when to start, when towithhold

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  The intention is to save the newborn infant‟s

life and minimize morbidity.

Initiation, when to start, when towithhold

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In some circumstances no effort is made to

save the life of the newborn◦ Providing peaceful death for the child and

emotional support for the parents

Initiation, when to start, when to

withhold

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  Is this approach never ethically justified ?

The parents should decide ?

In some settings resuscitation should not beattempted ?

Ethically justified?

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The AAP Committee on Fetus and newbornemphasize the importance of basing

decisions on an assessment of the child‟sbest interest.◦ An intervention is generally considered to be in a 

patient‟s best interest if the overall benefit to the 

patient outweighs the overall burden to the patient .

Ethical?

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A duty to act in the patient's bestinterest-Beneficence

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  GA – when is young too young ?

Congenital abnormalities ?

Chromosomal abnormalities ?

Possible clinical settings

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  If there is a reasonable chance it will provide

the patient with an overall net benefit anddoes not represent an injustice or unfair

burden to the infant

To start

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What unfair burden to the infant implies isdiscussable:◦ But If death is inevitable even if treatment is started

◦ That the prospect to survive without majorhandicaps is extremely poor

It would be regarded as an unfair burden

To start

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  Based on Relevant data

◦ Predicted survival

◦ Morbidity

Application of ethical reasoning and analysesof these data

To start

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  Which data are available ?

Are they valid ?

Are there any consensus based on theavailable data ?

Do they apply to our clinical setting ?

Are the data relevant ?

Application of available data

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Previously neonatology was advancing so fastthat outcome data reported as “new” werealready out of date.

However, for the last decade there has been amore steady state in the development inneonatology, thus outcome for prematureinfants borne in 2000, is still valid for infantsborn in 2011.

Application of available data: Are outcomedata relevant in today „s clinical setting.

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GA used as guidelines◦ Based on outcome data

GA – when is young too young

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The UK, Nuffield Counsel on Bioethicspublished guidelines in 2006.

Resuscitation should not be standard practiceat 22 completed weeks, unless requested in

written by the parents

Parents should be given a choice at 23completed weeks

And possibly at 24, but at 25 resuscitationshould be done.

GA – when is young too young

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  Norway have similar consensus, but put 23

completed weeks in their recommendation,others have 24 completed weeks

GA – when is young too young

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  How certain is it that the GA is correct

How to validate outcome◦ Quality of life measurements?

GA – when is young too young

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Choice of treatment, do we domore harm than good

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  New treatments have been initiated without

good evidence based foundations.

Unexpected side-effects, despite clinicaltrials

Off-label drugs

Choice of treatment, do we do moreharm than good

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  “ Organ targeted” approach: 

◦ Catch-up growth or beneficial under-nutrition

◦ Perceptive hypercapnia – good or bad?

◦ “high” vs “low” oxygen approach 

Choice of treatment, do we domore harm than good

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An important question that needs to beconsidered is whether the neonatologist‟sobligation is to preserve life for whatevercosts?

Is there any obligations to provide lifesustaining treatment if the benefits of thattreatment no longer outweigh the burden tothe patient?

Do we prolong life or just delay death?

Withdrawal of treatment, end of lifedecisions

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Who decides◦ Doctor ?

◦ Parents/Family ?

◦ Child ?

◦ Nurses ?◦ Others ?

Withdrawal of treatment, end of life

decisions

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  Guidelines/laws

Communication “health workers/parent” 

Aim “joint” decision  Ethical committees

Outside “second opinions” 

Withdrawal of treatment, end of life

decisions

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Benevolent Injustice; A Neonatal Dilemma; Brenda Barnum; Advances in Neonatal Care • Vol. 9, 3; 132-136,2009

BMA Ethics: End-of-life decisions Views of the BMA, August; 2009

Consent and end of life decisions, John Harris; J Med Ethics ;29:10–15; 2003

Dignified Death for Severely Impaired Infants: Beyond the Best-Interest Standard; Pedro Weisleder, 22: 737 J

Child Neurol; 2007

End-of-life decision before and after birth: changing ethical considerations; Andrew B. Pinter; Journal of Pediatric Surgery ; 43, 430–436; 2008

The ethics of delivery-rooms resuscitation. Byrne S, Szyld E, Kattwinkel J. Seminars in fetal and neonatalMedicine,13:440-447, 2008

Ethics in Neonatal Neurology: When is Enough, Enough? Eric Racine, Michael I. Shevell; Pediatr Neurol ;40:147-155.2009

Principles of Biomedical ethics. Beauchamp TL, Childress JF. New York, NY, Oxford University Press (ed.5), 225-

282, 2001 Moral dilemmas in neonatology as experienced by health care practitioners: A qualitative approach; Florence J.

van Zuuren, Eeke van Manen; Medicine, Health Care and Philosophy; 9:339–347;2006

Moral Reflections on Neonatal Intensive Care; William Meadow and John Lantos, 123;595-597 Pediatrics; 2009

Parental Refusal of medical treatment for a newborn, John J Paris, Michael D Schreiber, Michael P Moreland.Theoretical Medicine and Bioethics, 28:427–441, 2007.

Resuscitation of extremely low gestational age infants: an Advisory Committee‟s Dilemmas, Daniel Batton, ActaPædiatrica ; 99, 810–811, 2010

The Ethics of Newborn Resuscitation Mark R. Mercurio; Semin Perinatol 33:354-363; 2009 Withholding and withdrawing of life sustaining treatment in the newborn; J Tripp, D McGregor; Arch Dis Child

Fetal Neonatal ;91:F67–F71; 2006

The neonatologist's dilemma: catch-up growth or beneficial undernutrition in very low birth weight infants-whatare optimal growth rates? Thureen PJ. J Pediatr Gastroenterol Nutr.;45 Suppl 3:S152-4., 2007

Beslutningsprosesser for begrensning av livsforlengende behandling hos alvorlig syke og døende; TheNorwegian Department of Health, 2009

Melanie P. McGraw and Jeffrey M. Perlman: Attitudes of Neonatologists Toward Delivery Room Management of Confirmed

Trisomy 18: Potential Factors Influencing a Changing Dynamic; 121;1106-1110 Pediatrics,2008

Acknowledgement/References

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Thank you