ETHICAL DILEMMAS IN PICU

May Chehab, MD, FRCP(Lon), FRCP(Edin), ABIP

ETHICAL DILEMMAS IN PICU

Life support technology

Patient and family wishes

Medical judgments

Professional clashes

Ethical battlefield
 ETHICAL DILEMMAS IN PICU

 Ethical dilemmas in pediatrics are exacerbated, and tensions often increased,

due to the children
Inherent vulnerability
Inability to make decisions
 Ethical dilemmas involve

Healthcare team
Children
Parents
 Economic, cultural, religious, and legal differences, as well as personal
attitudes, play a role in ethical dilemmas in PICU
 m ic Pe
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Ethic
Ethics concerns doing the “right thing” when faced with a choice
 MEDICAL ETHICS

System of moral principles that apply values to the practice of

clinical medicine and in scientific research

1-Autonomy
2-Beneficence
3-Nonmaleficence
4-Justice
 MEDICAL ETHICS

AUTONOMY PATERNALISM

 The right to self-determination  Making decisions on behalf of others

 The right to make decisions in their presumed best interest
regarding one’s body  Based upon a sense of superiority of
understanding, knowledge,
experience, or training
 MEDICAL ETHICS

BENEFICIENCE NONMALEFICIENCE

 Moral obligation to take positive  Hippocratic oath

steps to help others  Primum non nocere: first, do no
 Positive beneficence: to provide harm
benefits  Intentionally refraining from direct
 Utility beneficence: balance actions that would cause harm
benefits and burdens that will  Harm is best understood by
provide best overall results Bodily harm
Removal or elimination of
important interests of an individual
 MEDICAL ETHICS

Justice/Rationing

 Distributive justice demands fairness in the delivery of healthcare

 Fair, equitable treatment

 Rationing reflects an economic decision to limits costs with the ability of

delivery of health care resources to population
 Equity

 Resources allocation
 ETHICAL DILEMMAS IN PICU

 DNR orders
 Withdrawal/withholding of Life Supporting Therapy (LST)
 Nutrition at end of life
 Futility

 Informed consent, assent, dissent

 Best interest

 Family-centered care
 Resources allocation
 Clinical research

 Telemedicine
 Teaching trainees
 Behavioral issues and attitudes
DNR ORDERS
WITHDRAWAL/WITHHOLDING OF LST
NUTRITION AT END OF LIFE
FUTILITY
 PERMANENT COMMITTEE FOR RESEARCH AND FATWA, SAUDI ARABIA ISSUED FATWA (DECREE) NO.12086 ON 28/3/1409 (1989)

DNR Dead on arrival

3 competent
specialized DNR stamped in medical file with patient unsuitable for
physicians resuscitation

Serious irremediable disease with almost certain death

Mentally or physically incapacitated, with stroke or late stage

cancer, severe cardiopulmonary disease and several cardiac
arrests
PERMANENT COMMITTEE FOR RESEARCH AND FATWA, SAUDI ARABIA ISSUED FATWA (DECREE) NO.12086 ON 28/3/1409 (1989)

Irremediable brain damage after a cardiac arrest

DNR
Resuscitation deemed useless and inappropriate
3 competent
specialized
physicians Opinion of patient/relatives should not be considered in
withholding or withdrawing resuscitation, as it is a medical
decision and it is not in their capacity to reach such a decision
 THE ISLAMIC MEDICAL ASSOCIATION OF NORTH AMERICA (IMANA
2005)
When death is inevitable, death should be allowed without
unnecessary interventions

DNR Does not believe in prolonging misery on mechanical life support

in a vegetative patient

Treat with full respect, comfort measures and pain control

ISLAMIC CODE OF MEDICAL ETHICS, THE ISLAMIC ORGANIZATION,
ARTICLE 63

DNR
Treatment of a patient can be terminated if a team of medical
experts consider that treatment is futile

Treatment of patients whose condition has been confirmed to

be useless by the medical committee should not be commenced
 PERSPECTIVE
CHAMSI-PASHA H, ALBAR MA
J RELIG HEALTH (2017) 56:400–410

Seeking Remedy
Islamic Jurisprudence

 May be obligatory in certain lifesaving situations

 May be preferred or encouraged

 May be facultative or optional (mobah)

 May be (makrooh), discouraged

 May be (haram) or not allowed

ETHICAL DILEMMAS AT THE END OF LIFE: ISLAMIC PERSPECTIVE
CHAMSI-PASHA H, ALBAR MA
J RELIG HEALTH (2017) 56:400–410

 Families of children in PICU are faced with ethical dilemmas

related to
Justification for ‘‘prolonging’’ suffering of loved ones
Use of financial resources to keep loved ones in PICU
Giving consent to disconnect ventilator in terminal stage
Forgoing LSMT is ethically supportable when burdens of treatment outweigh benefits to
child

Respectful, truthful, and thorough communication between members of treatment team,

patient, and family decision-makers supports the process of shared decision-making

Perceived disagreement among healthcare professionals may be stressful

Each child is entitled to “open and honest” communication of “age-appropriate
information about his or her illness, as well as potential treatments and outcomes, within
the context of family decisions

Each child should be “given the opportunity to participate in decisions affecting his or her
care, according to age, understanding, capacity, and parental support”

Child's participation can be enhanced through use of care-planning tools

It may be ethically supportable to forgo LST without family agreement in rare
circumstances of extreme burden of treatment with no benefit to patient beyond
postponement of death

Children capable of safely eating and drinking who show signs of wanting to eat or drink
should be provided food and fluids

Medically administered nutrition and hydration may be withheld or withdrawn when

there is consensus that they do not provide net benefit to child and thereby fail to
support child’s best interests
 NUTRITION AT END OF LIFE
J RELIG HEALTH (2017) 56:400–410

In Islam, nutritional support is considered basic care and not medical treatment; hence, it
is a duty to feed people who are no longer capable of feeding themselves

Islamic law, therefore, does not allow withholding or withdrawal of basic nutrition because
this would lead to death by starvation, which is a crime in Islamic teachings
ETHICAL DILEMMAS IN PICU
WITHDRAWAL/WITHHOLDING OF LIFE-SUSTAINING THERAPY (LST)

Majority of deaths in PICU (60-80%) follow a decision to withdraw or

withhold LST rather than failed resuscitation efforts

North America and UK: 60-65% of overall unit death rate

Europe and Brazil: Less than 50% of overall unit death rate
Varying clinical practices, different attitudes, cultural backgrounds and
changes in practice over time
Intensivists more reluctant to withdraw than to withhold LST particularly
for some religious beliefs
DO PHYSICIANS DISTINGUISH BETWEEN WITHHOLDING AND
WITHDRAWING LIFE-SUSTAINING THERAPY?
 50% of intensivists found withdrawal more psychologically and ethically
problematic than withholding LST
 Religious physician found withdrawal more ethically problematic than
withholding LST but not more difficult psychologically
 End-of-life discussions between physicians, patients, families should include

 Advance directives
 Patient’s religious and spiritual beliefs
 The potential quality of life after discharge

Despite an ethically or psychologically difficult decision, physicians should respect the

patient’s wishes or transfer the care
Current Opinion 2018; 31(2): 179-185
 WITHDRAWAL / WITHHOLDING OF LST

Nurses feel left out in decision making as they are not always involved in multidisciplinary end-of-
life discussions
Nurses understand that the intensivist decision to withdraw

Takes time to reach



Carries a legal responsibility



Nurses and junior doctors experience impatience and desire for decisions

Successof intensive care is dependent upon

The nursing input as much as on the medical


The co-operative working between nursing and medicine



Nursing Ethics 2005 12 (3)

 ETHICAL ISSUES SURROUNDING END-OF-LIFE CARE

 Widely accepted around the world on medical, legal and ethical grounds
 End-of-life decisions should be based on team discussions
 Reduce subjective elements to a minimum
 Provide input from all members of the ICU team
 Importance of consensus as a symbol of the team’s strength
 Family should be approached and facts discussed fully with them

Quality of life
 ETHICAL ISSUES SURROUNDING END-OF-LIFE CARE

 Consider advice of religious counsellors, in-house legal counsel, medical administration,

or ethics committee
 To arrive at consensus with all parties involved, consider
 Education
 Counseling
 Clear communication in understandable language
 Reflection
 Anticipation of events to come
 HIPPOCRATES STATED THAT “TO ATTEMPT FUTILE TREATMENT IS TO DISPLAY AN IGNORANCE THAT IS ALLIED WITH
MADNESS.”

NO UNIVERSALLY ACCEPTED CONSENSUS DEFINITION FOR MEDICAL FUTILITY CURRENTLY EXISTS

 When  When the quality of the most probable

an intervention has no
appreciable chance of improving the outcome for a particular proposed
patient’s medical condition intervention is overwhelmingly poor

Seminars in Pediatric Neurology, Vol 11(2); 2004: pp 179-184

INFORMED CONSENT, ASSENT, DISSENT

AMERICAN ACADEMY OF PEDIATRICS COMMITTEE ON BIOETHICS IN

ITS REPORT/POSITION STATEMENT TITLED “INFORMED CONSENT,
PARENTAL PERMISSION AND ASSENT IN PEDIATRICS.”
PEDIATRICS. 1995;95:314–317, REAFFIRMED 2006
 INFORMED CONSENT, PARENTAL PERMISSION AND ASSENT IN
PEDIATRICS

Triad of physician, parent(s), and patient

Although children cannot be treated as rational, autonomous decision-makers,

pediatricians should give serious consideration to children's developing
capacities for participating in decision-making

Older child and adolescent should be included in medical decision making

process at a developmentally appropriate level
 INFORMED CONSENT, PARENTAL PERMISSION AND ASSENT IN
PEDIATRICS

In addition to parent’s consent, active assent or dissent of older child/

adolescent should be solicited and respected if possible

Older child/adolescent assent and parent’s consent are needed independently,

but each is insufficient alone to proceed

Both are required elements, with the older child/adolescent’s dissent

overriding parental consent.
 INFORMED CONSENT, PARENTAL PERMISSION AND ASSENT IN
PEDIATRICS

Dissent may be ethically binding in case of nontherapeutic research or

nonessential treatment

It is deceptive to ask for assent when treatment is necessary and child's

dissent will be overridden

Involve child in discussing his health care even when it is essential

and only parental permission is required
INFORMED CONSENT
SEMINARS IN PEDIATRIC NEUROLOGY. 2004; 11(2):179-184

Cognitive capabilities acquired with maturation

Individual variation between children and adolescents
During school years, child begins to acquire necessary cognitive skills to
provide a competent consent
Independent consent in <11years is not yet feasible
Feasible in > 15 years

Gray zone of comprehension between these two ages

INFORMED CONSENT, PARENTAL PERMISSION AND ASSENT IN
PEDIATRICS

An ethical duty to
 keep the child informed in age-appropriate ways
 Solicit child's assent when appropriate, to undergo the proposed
treatment
‘BEST INTERESTS’ IN PEDIATRIC INTENSIVE CARE: AN EMPIRICAL ETHICS STUDY
ARCH DIS CHILD 2017;102:930–935

International ethical and legal standards by which decisions are made

about children
English law states that child’s best interests go beyond medical
interests to include medical, emotional and other welfare issues

Legal and professional guidance states that parents and clinicians should
share ‘best interests’ decisions

Deciding best interests relies on a process where clinicians encourage parents

that medical view of child’s best interests is correct
FAMILY-CENTERED CARE
 FAMILY-CENTERED CARE
HOSPITAL PEDIATRICS VOLUME 7, ISSUE 2, FEBRUARY 2017

Family is acknowledged as expert in care of child

Perspectives provided by family are important to clinical

decision making
Parents should be viewed as partners in care rather
than visitors
 FAMILY-CENTERED CARE
HOSPITAL PEDIATRICS VOLUME 7, ISSUE 2, FEBRUARY 2017

Parental presence during medical rounds is encouraged in

some institutions
Might increase time spent conducting rounds and disrupt usual workflow

Fear that presence of parents might inhibit open discussion among staff
FAMILY-CENTERED CARE
HOSPITAL PEDIATRICS VOLUME 7, ISSUE 2, FEBRUARY 2017

The ethical principle is that all patients have the right to have
family members present and that the patients’ family members
should have the opportunity to be present during resuscitation of a
relative
RESOURCES ALLOCATION
 ETHICS OF INTENSIVE CARE RESOURCES ALLOCATION

Ethics dictates that resources be allocated where there are more likely to have impact
 What to Do When There Aren’t Enough Beds in PICU?

BEDSIDE
RATIONING

 Economic necessity, juridicially and ethically legitimate

 The ultimate objective is that it must be equitable
WHAT TO DO WHEN THERE AREN’T ENOUGH BEDS IN PICU?

Deontological (or duty ethics)

Utilitarian ethics
 Duty Ethics Utilitarian Ethics

Rightness or wrongness of an The patient who will benefit

action most should be admitted to the
Moral duty ICU
The patient with the lowest
No patients admitted to ICU transport risk should be the
should be transferred to make one to be transferred to a
room for a new admission different hospital

Bioethics. 2012;26: 259

 Pediatrics 2014;133:907–912

AMA Council on Ethical and Judicial Affairs

Factors to allocate scarce resources

Likelihood of benefit to the patient

Impact of treatment in improving the quality of life

Duration of benefit

Urgency of treatment
Amount of resources required for successful treatment
CLINICAL RESEARCH
 CLINICAL RESEARCH
Conducting research in PICU is challenging but remains essential

Scientific value and validity

Assent
Necessary requirements for Informed consent and consent from stakeolders
ethical conduct of clinical
research Favorable risk– benefit ratios

Subject selection
Respect for subjects
 CLINICAL RESEARCH

“Minimal risk” is the threshold of harm to which children can be exposed in

clinical research without additional procedural protection

Minimal risk has been defined as a level of harm or discomfort that is not
greater than those risks that a child may encounter in daily life
 ETHICS OF DRUG RESEARCH IN THE PEDIATRIC INTENSIVE
CARE UNIT
PEDIATR DRUGS (2015) 17:43–53

Survey of 415 pediatric intensivists

95 % found RCTs on potentially lifesaving therapies ethically acceptable
At the same time, almost all were in ethical conflict with these studies

Physical environment challenges design and conduct

Specific challenges faced of research
by researchers in PICU
Young age to consent
Incapable due to acute illness and sedation
Parents responsible for decision to involve child

Painful and invasive procedures

Burden and risk of research procedures
TELEMEDICINE
 ETHICAL ISSUES IN THE DEVELOPMENT OF TELE-ICUS
J MED ETHICS 2011;37:655E657

Most models of tele-ICU care rely on doctors off site

Patients are unable to choose or meet the responsible doctor
‘e-ICU’ adds to the conventional nurse for every two patients, an ‘e-nurse’
for 30-35 beds and an ‘e-intensivist’ for 100-130 beds

Potential damage to the doctor-patient relationship is the major ethical

difficulty with this new technology
 Ethical issues in the development of tele-ICUs
J Med Ethics 2011;37:655e657

Beneficience Justice
 Not harmful to patient
 Virtual ICU coverage when no ICU
 Tele-ICUs is a welcome addition
coverage is available during off hours
Non-maleficience
 Layer of insulation between treating
doctor and patient
 Patient transforms into a name and sets of
data on computer screen
TEACHING TRAINEES
 Training physicians should not compromise optimal patient care

Safe and effective training in life-saving procedures

Computer-based learning
New educational modalities in
most training programs Simulation
Teach conceptual and technical
fundamentals
Closely supervised, controlled patient experiences

Real patient encounters

BEHAVIORAL ISSUES AND ATTITUDES
 ETHICS IN THE INTENSIVE CARE UNIT
TUBERC RESPIR DIS 2015;78:175-179

Verbal abuse
Major sources of
Behavior-related conflicts Personal animosity
conflicts
Mistrust
Communication gaps
Disrespect

Failure to return phone

calls

Verbal abuse and nurse-physician disruptive behavior have

negative impact on patient safety
 ETHICS IN THE INTENSIVE CARE UNIT
TUBERC RESPIR DIS 2015;78:175-179

Lack of psychological support

Major sources of
conflicts

Conflicts associated with end-

of-life care Absence of staff meetings

Problems with decision-making process

 ETHICS IN THE INTENSIVE CARE UNIT
TUBERC RESPIR DIS 2015;78:175-179

70% of ICU workers

reported perceived Often considered severe
conflicts
Significantly associated with job strain

Nurses perceived distressing situations more frequently than

physicians

45% of nurses reported having left or considered leaving

BURNOUT AND MORAL DISTRESS
ETHICS IN THE INTENSIVE CARE UNIT /BURNOUT
AM J RESPIR CRIT CARE MED 2007;175: 686-92

Can affect up to 45% of ICU nurses and physicians

Psychological syndrome in response to chronic emotional, interpersonal
stressors at work , and physical exhaustion
Emotional instability
Commitment difficulties
Feeling of failure
Urge to leave job
Insomnia, irritability, and depressive symptoms
Impact the quality of care provided
Increase in medical errors
SUICIDE RATES AMONG PHYSICIANS: A QUANTITATIVE AND GENDER ASSESSMENT (META-ANALYSIS)
AM J PSYCHIATRY 2004;161:2295-302

High rate of physician suicide

Suicide rate among male doctors is 40% higher than among males in
general
Suicide rate among female doctors is 130% higher than among women in
general
MORAL DISTRESS

Presents in all ICUs practitioners: physicians, nurses, respiratory therapists

Psychological imbalance resulting from inability to follow one’s sense of

moral responsibility that dictates the ethically right action

Clear about right action to do but prohibited by internal restraints, external

obstacles, or various clinical situations
MORAL DISTRESS
HEC FORUM 2016; 28:53–67

Internal Restraints External obstacles

 Limitation of resources

 Poor understanding of patient’s medical  Shortage of staffing

condition  Family wishes
 Feeling of helplessness  Hospital policies
 Fear of compromise of self-integrity  Team dynamics

 Organizational influences

 Legislation

Clinical Ethical Issues

End-of-life care
Futile treatment
Informed consent
Lack of provider continuity
 PICU
AND WHY IS IT BECOMING A STRIKING PHENOMENON?

 Stressful environment
 Advances in technology

 Futile treatment

 Conflicting opinions on treatment and prognosis

 Breaking bad news

 Discussing with parents benefits of continuing life-saving interventions

 Poor communication

 Inadequate resources

 Hierarchies of decision-making

 Witnessing unethical behaviour

MORAL DISTRESS
HEC FORUM 2016; 28:53–67

 Challenges one’s moral integrity

 Inflicts negative consequences to patient care
 Associated with
 Job dissatisfaction
 Higher levels of burnout
 Poor job retention
 Leads to
 Anger and frustration
 Somatic manifestations such as headaches, sleep disturbances
 Impaired social relationships
 Editorials

PCCM August 2017 • Volume 18 • Number 8

Moral distress is a common occurrence that needs coping strategies to be devised on

individual, institutional, and societal levels

Self-reflection and cultivation of moral resilience, “the capacity of an individual to sustain

or restore their integrity in response to moral distress,” are coping strategies that should be
entertained
 Editorials

PCCM August 2017 • Volume 18 • Number 8

Institutional Ethics Committees may serve as a valuable resource to help healthcare

professionals and parents understand the ethical issues at stake, to facilitate discussion
among team members, and to make specific recommendations

A culture of ethics should be nurtured by the organization to create an environment

where a good team dynamics dictates mutual respect, trust, and effective
communication
 MORAL
DISTRESS

ETHICAL
DILEMMS

MORAL
DISTRESS
‘‘Thetask of medicine is to cure sometimes, to relieve often, and to comfort
always.’’
16th-century French surgeon Ambroise Pare

Ethics is knowing the difference between what you have a right to do and
what is right to do.
Potter Stewart, American judge, 1915–1985