COMMITTEE ON RESIDENT’S

EDUCATION

SOCIETY OF CRITICAL CARE

MEDICINE
ETHICS IN CRITICAL CARE MEDICINE

Forgoing Life-sustaining Treatment

Brain Death and Organ Donation

Horacio F. Zaglul, MD
Edward M. Spencer, MD
Kathryn L. Weise, MD
 Introduction

• Goals of the Presentation

• Overview of the Presentation
 Definitions

• Ethics
• Social Ethics
• Biomedical Ethics
• Clinical Ethics
 Clinic Ethics: Past and Present

• Before 1960 - Based on traditional professional

ethics of medicine
– Physician was major decision-maker
– Physician considered a person of highest
character who adhered to prominent virtues
– Paternalistic
Clinical Ethics: Past and Present (continued)

• Since 1960 - Based on patient “rights”

WHY THE CHANGE?
• Ethical lapses in human research noted in 60s and 70s
• Rapid increase in medical technology
• Quinlan Case - First important “right to die” case
• President’s Commission for the Study of Ethical
Problems in Medicine
• State laws defining the parameters for decision-
making at the end of life
Understanding the basis for Clinical Ethics
and its language

Ethical Philosophies
• Deontology (Kant)
• Consequentialism (Mill)
• Virtue (Aristotle)
Understanding the basis for Clinical Ethics
and its language (continued)

Methodologies for Addressing Clinical Ethics

Problems
• “Ethical Principles” (respect for autonomy,
beneficence, nonmaleficence, justice)
• Casuistry (case based analysis)
• Virtue/care (emphasis on character)
• Pragmatism (whatever works)
 Ethical decision making in healthcare
today

• Medical care defined by Courts, Legislatures,

Commissions, Media, Ethics Committees, and others
• Ethical decision-making may be very complex
• No longer does the doctor make decisions alone nor
does the autonomous patient exercise his/her rights
without interference

Clinical ethics decisions more process oriented than

outcome oriented, requiring a process of consensus
building no matter the outcome.
 Forgoing life-sustaining treatment
General considerations
• Does not necessarily imply an intent or choice to hasten the death of a
child
• Duty of care is not an absolute obligation to preserve life by all means
• Forgoing life-sustaining treatment does not imply that a child will
receive no care; The “focus” of treatment changes from life sustaining
to palliative
• The background to all treatment is “in the child’s best interests”
• Withholding and the withdrawal of live saving treatment are ethically
equivalent but emotionally they can be poles apart
• Decisions should be frequently reviewed, and can change with changing
circumstances
• Treatment of the dying patient is not euthanasia
 Situations where Forgoing life-sustaining
treatment might be considered
• The “No Chance Situation”
Life-sustaining treatment simply delays death
• The “No Purpose Situation”
The degree of physical or mental impairment is or will be so
great that it is unreasonable to expect the patient to bear it
• The “Unbearable Situation”
Parents wish to have a particular treatment withdrawn or
refuse
further treatment irrespective of the medical opinion on its
potential benefit
• Any combination of the above
i.e. the Permanent Vegetative Status
 Who has the Authority to make Health
Care Decisions
• Parents’ moral responsibility for their child’s care
• Their responsibility can over-ride a child’s refusal
• Legal Guardian: Responsibility acquired by
people who are not the child’s natural parents
• Parent’s/legal guardian’s role is not unlimited
 Capacity and Competence

• Emancipated Minor Status: can legally refuse

treatment
• Mature Minor: has intellectual/emotional
development to understand the nature of the
medical decision and its consequences. They can
give valid consent.

Refusing treatment is increasingly becoming an

ethical issue instead of a legal one.
 Special Circumstances

• Child Abuse
• Congenital Malformations
• Advance Directives: Living Wills or Donor Cards
• Parents usually unable/unwilling to “let it go”
• Parental guilt might interfere with the decision
process
• The feeling that the child has already been through
enough
• Neonates and premature babies
 Conflict Resolution
• Understand Parameters within which decision must be made
State and Federal Law
Guidelines from commissions, professionals groups, networks, etc
Community and Institutional Values
Professional Codes
Personalities and beliefs of persons involved
Internal and external power issues

• Understand what help is available

Ethics committee
Professional organizations
Attorney
State legislative committees
Religious organizations
Courts (as a last resort)
 Conflict Resolution (continues)
• Establish rapport with the parents and the patient
as soon as possible
• Design an “overall”, “prospective” plan of care
• Communicate face-to-face with the
parents/caretakers
• Above all, respect the family’s wishes at all times

Discussion, Consultation and Consensus

 Principles for Palliative Care
The AAP calls for a common objective:
“The goal is to add life to the child’s years, not
simply years to the child’s life”

• Palliative care enhances the child’s quality of

life by symptoms-relief and by dealing with
circumstances/conditions that prevents the child
to enjoy life
 Practical aspects of Palliative care:
• Can be provided regardless of the location: the patient’s
home, or in hospitals, hospices, etc.
Sedation/Analgesia
Treatment of pain/anxiety is an essential
aspect of palliative care
Treatment of dyspnea
Assisted ventilation might be indicated to
provide symptomatic relief
Treatment of nausea and vomiting
Limitation of fluids/feeds
Treatment of seizures
Treatment of depression/anxiety
Education
 PRACTICAL ADVICE
• Never rush decisions
• Avoid rigid rules
• The decision to forgo curative therapy must be followed by
consideration of the child’s palliative or terminal care needs
• If in doubt what to do: err on the side of sustaining life
• Do not expect complete consensus
• Do not withdraw palliative or terminal care designed to make
the patient comfortable
• Palliative treatments that may incidentally hasten death may be
justified if their primary aim is to relieve suffering
• The USA law does not support the concept of active euthanasia
 Brain Death and Organ Donation
Definitions of Death
• Cardiorespiratory death: irreversible cessation of
circulatory and respiratory function
• Whole brain death: irreversible cessation of all
functions of the entire brain
• Partial brain death (controversial): irreversible
cessation of brain functions necessary for
personhood
 Alternative views of death
“Higher brain” or partial brain concepts of death focus on:
• loss of cognitive functions
• loss of capacity for memory, reasoning, and other higher brain
functions
• loss of personal identity
While many individuals feel that loss of the above capacities
make a person “as good as dead,” These views are not
universally held and currently cannot be measured.
At present we are left with defining death in the ICU by
measurable parameters.
 Uniform Determination of Death Act
1982
The Uniform Determination of Death Act forms the
legal basis for the recognition of brain death in the
US. This act states that an individual is dead after:

• Irreversible cessation of circulatory and respiratory functions,

or
• Irreversible cessation of all functions of the entire brain,
including the brain stem.

Determination of death must be made in accordance

with accepted medical standards.
 Complicating factors in defining
and explaining death

• Widespread failure of health care providers to believe that death

by neurologic criteria is equivalent to cardiorespiratory death
• Confusing use of terminology when speaking with families, e.g.
“continuing life support” in the face of brain death while
awaiting organ donation
• Different and evolving religious definitions of death
– Orthodox Jewish tradition
– Islamic tradition
• Clinical findings may not support irreversible loss of all brain
functions, e.g. lack of diabetes insipidus when all other findings
are consistent with brain death
 Diagnosis of death by neurologic criteria
Locally used guidelines are usually adapted from the President’s Commission,
1981, and the Task Force for the Determination of Brain Death in Children
(AAP), 1987.
Prerequisites for brain death testing:
• Recognized cause of coma sufficient to explain irreversible loss of all brain
function
• Exclusion of potentially reversible causes of coma, including:
• sedatives and paralyzing drugs
• hypothermia
• metabolic and endocrine disturbances (severe electrolyte or glucose
disturbances)
• hypotension
• surgically operable intracranial conditions
• other reversible causes
 Clinical Testing
1. Absence of cortical function
• Coma; no voluntary movements; no posturing; no seizures;
spinal reflexes may persist
2. Absence of brainstem function
• No sympathetic or parasympathetic pupil regulation
• Absent oculo-cephalic and oculo-vestibular responses
• Absent blink response to corneal stimulation
• Absent gag response
• Absent oculo-cardiac response
• No breathing with standardized apnea testing
3. Repeated observations may be recommended (12-24 hours in
children older than 1 year of age; longer for neonates and do
confirmatory testing)
Signs of central transtentorial herniation.
Plum F, Posner JB. The diagnosis of stupor and coma. 3rd ed.
Philadelphia:FA Davis, 1982:104.
 Confirmatory testing
In the US, confirmatory tests are not required under
most guidelines if prerequisites are met and testing is
not confounded. Example: apnea test unlikely to be
valid in patient with cervical spine transection,
necessitating alternative testing.

Confirmatory tests do not prove brain death in the face

of clinical signs that brain death has not occurred.
 Types of confirmatory testing
• Tests of brain activity
• EEG: falling out of favor in US since testing is confounded
by the same issues that may confound clinical exam (sedation,
hypothermia), is plagued by artifact in the ICU setting, and
does not assess brainstem function well
• Evoked potentials: not sufficiently validated; highly dependent
on technician and interpreters
• Tests of blood flow
• 4-vessel contrast angiography: gold standard
• radionuclide scintigraphy: less invasive; many consider it as
reliable as angiography
• transcranial Doppler sonography: reliable in experienced hands only
• MRI; xenon CT scanning: less accessible; not frequently used
 Dynamic Radionuclide Cerebral
Angiogram Consistent with Brain Death

Goodman J, et al, Pediatric Brain Death and Organ/Tissue Retrieval,

Kaufman HH ed., 1989 Plenum Publishing Co, New York, p.144
Abnormal static phase radionuclide cerebral imaging scan, in
which no radionuclide material is detected within the cranial vault.
The central “hot spot” reflects circulation to the patient’s nose,
which serves to confirm the entrance of radionuclide up to the level
of the common carotid artery.
Schwartz JA, et al, Pediatric Brain Death and Organ/Tissue Retrieval,
Kaufman HH ed., 1989 Plenum Publishing Co, New York, p.144
EEG Recording Exhibiting Electrocerebral Silence

Moshe SL, et al, Pediatric Brain Death and Organ/Tissue Retrieval,

Kaufman HH ed., 1989 Plenum Publishing Co, New York, p.144
 Discussing brain death with families
• When?
The concept should be introduced when the medical team feels that its
discussion will improve family’s understanding of the patient’s condition and prognosis.

• Who?
A team member who has a good rapport with the family, has a full
understanding that brain death is no less death than is cardiorespiratory death, and can
maintain a continuing supportive role.

• Why?
It is a generally accepted duty of medical caregivers to disclose truthful
information to families that will help them to understand their child’s condition, and to
provide guidance to them in their roles as medical decision makers. This is also true in
difficult situations such as this. Many physicians find it difficult to discuss such issues;
role modeling may allow development of a skillful and compassionate approach.
The family who refuses the diagnosis of brain death
• Families may be unable to understand or to accept the diagnosis of brain death
• Contributing factors
• Lack of trust
• Mixed messages
• Sudden nature of many events leading to brain death

• Approach to the reluctant family

•Patience; consistent messages given in a compassionate
manner
•Consider involving clergy or others in whom the family has
confidence
•Consider and respect religious beliefs; some states allow
religious beliefs to override local hospital policy
 Hospital policies on brain death
• Most hospitals have policies for diagnosing brain death and
discontinuing support when it is diagnosed
• Policies developed to (a) ensure appropriate arrival at the diagnosis
(sets local standard of care), and (b) to define under what
circumstances cardiorespiratory support may be discontinued over a
family’s wishes
• Individual pediatric specialists may be reluctant to discontinue support
against the wishes of the family in spite of presence of a hospital
policy. Gaining agreement to discontinuation of support is preferred
• Involving others who are trusted by the family, or in some cases
complying with religious guidelines to continue support until
cardiorespiratory death has ensued, may be the course chosen
 Ethical approach to brain death and organ
donation
• Dead donor rule upholds the moral prohibition against
killing
• Care in diagnosing death is designed to protect severely
compromised, but living patients
• Suspicions arise when re-definitions of death are perceived
as utilitarian, e.g., as merely providing a way to secure
organs for donation
• Organ transplantation in the face of accepted definitions of
death is justified by contributing to the good of society
• We live in a pluralistic society; all may not agree to
definitions of death or agree that donation/transplantation
are morally good
 Consenting families for organ donation

• Discussion of organ donation with families

recently regulated by HCFA
• Confidentiality must be conscientiously
maintained
• Consent of parents is essential
• Few centers currently have pediatric non-
heartbeating donor protocols
 Medical management of the organ donor
Goal of management is preservation of vital organ function and minimization of
potential for transmission of infection
(1) Cardiovascular management
• Recognize potential for myocardial damage due to pathophysiology of brain death
• Compensate for loss of neurologic control of BP, HR, and CO
• Management:
– Adequate but not excessive preload; CVP desirable; Swan-Ganz catheter may
exceed risk-benefit ratio
– Contractility: support clinically adequate output; use of catecholamines does not
clearly limit donor organ viability
– BP control: strive for normal ranges for age
– Consult cardiologist for echocardiographic evaluation of structure and function
Medical management of the organ donor
(continued)
(2) Pulmonary management
• Damaged lungs will not be able to be donated
• Management
– Treat underlying disease, infection
– Support oxygenation with optimal combination of
PEEP and oxygen to avoid lung injury
– Perform oxygen challenge test if lung donation is being
considered
 Medical management of the organ donor (continued)
(3) Endocrine management
• Potential for diabetes insipidus, adrenocortical axis dysfunction, thyroid
dysfunction, and loss of glucose homeostasis
• Management
– Evaluate for DI; serum and urine electrolytes; careful fluid and electrolyte
replacement, or IV DDAVP infusion (4 ng/kg/hr after 8ng/kg/hr load; adjust
every 30 minutes); replace lost fluids and electrolytes as needed
– Cortisol not proven beneficial; harm to organ performance also not proven
– Benefits of thyroxine or triiodothyronine suggested by some studies, not by
others. May try if hemodynamically unstable
– Insulin as needed to control glucose; benefit on hemodynamics controversial
 Medical management of the organ donor
(continued)
(4) Fluid and electrolyte management
• Recognize that fluid and electrolyte balance may be altered,
including sodium, potassium, calcium, magnesium, and acid-base
balance
• Management
– Maintain patent bladder drainage catheter and record outputs at
least hourly
– Provide standard pediatric fluids; adjust or supplement as
indicated by frequent monitoring
– Monitor renal function indices; consider renal ultrasound as part
of donor evaluation
 Medical management of the organ donor
(continued)

(5) Other potential management issues

• Dysregulation of temperature (loss of central control;
hypothermia) and coagulation difficulties (result of severe brain
injury) are common
• Management
– Warm patient with external devices and warmed fluids as
needed; avoid iatrogenic hyperthermia
– Monitor coagulation profiles; transfuse judiciously if
absolutely necessary to preserve organ function
After donation: follow-up and confidentiality
• Confidentiality of donor and recipient must be
maintained by medical caregivers
• Donor families may wish to learn about individuals
who benefited from the donation
• Recipients may not wish to be identified to donor
families, and their privacy rights are respected by
OPOs
• Follow-up between yourself and the donor family may
be done as you would with any family who has lost a
child, but must never violate the privacy of the
recipient family.