Tough Calls: Ethical Issues in Paediatrics

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Tough CallsEthical Issues in Paediatrics
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Gift

• 2 month old female
• Term NVD _at_ 2,8 kg
• HIV Exposed NVP given at birth
• Exclusive Formula Feeds
• Immunizations up to date

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Bridgette

• Ventilated in ICU
• Weaned very slowly but never lt60
• Renal Failure
• Urea 10-14
• Creatinine 100-170
• Hypertension
• ? steroid related
• Abdominal mass
• Dysplastic kidney
• Renal consult

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Bridgettes problems

• HIV Exposed
• PCR POSITIVE
• Severe Pneumonia
• PCP most likely
• Initally weanable but then deteriorated
• Renal Failure Hypertension Dysplastic Kidney

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Thandazani

• 3 month female
• Ex-prem at 30/40, LBW 1900g
• HIV status unknown
• Severe respiratory distress with hypoxia
• Weight gain 23g per day

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Thandazani

• Mothers HIV rapid and Elisa tests
• POSITIVE
• Babys PCR
• POSITIVE
• Not weanable on Day 14
• Maximum ventilation

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Ethical Issues

• The provision and limitation of treatment offered
  to children requiring intensive care
• End-of-life decision making
• Futility, Burden and Uncertainty
• Resource allocation

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Decisions! Decisions!

• Appropriate care that should be administered to
  infants and children is often
• Complex
• Controversial
• Costly
• Life and death

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Factors

• Role of the childs parents/guardians
• The influence of the wider family
• Complex personal and family agendas may hinder
  objective consideration
• Scenarios requiring a timely decision
• Further pressure is added
• Comprehensive analysis often not possible

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Distant perspectives

• Effects and consequences to society
• Pursuing extraordinary measures to sustain the
  lives of children with ongoing complex needs
  should be examined

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Whats the Value of Life?

• Highly emotive!
• Is it wrong to value one life over another
  because of the physical or mental imperfections
  that may be present in one individual?
• Should we embrace life ...whatever its perceived
  quality?
• Does the preservation of life outweigh all other
  considerations?

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The Budget

• It is an inescapable fact that the healthcare
  budget is not infinite
• The consequences of providing advanced support to
  a young child or a premature baby cannot be
  ignored
• Survivors will need to draw on resources from
  health, social and educational services, for many
  years, over and above their contemporaries

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• This will impact on our finite pool of resources
• Lifesaving care to a few, where both the acute
  and chronic resource implications are high
• vs
• Care for a greater number of people with
  conditions that are likely to be cured and
  successfully managed

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• Cost of neonatal care is easily within the top 10
  most costly
• Cost is inversely proportional to gestational age
  i.e. the more premature the higher the cost

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• A cost-benefit diagram is depicted, with
  declining efficacy of a treatment simultaneous
  with increasing cost and burden of the therapy.
• Futility might be seen as the limit, where
  benefit is almost nil and cost and burden are
  extreme.

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Four Axioms of Bioethics

• Autonomy
• Beneficence
• Non-maleficence
• Justice

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Autonomy

• Autonomy is the personal rule of the self that
  is free from both controlling interferences by
  others and from personal limitations that prevent
  meaningful choice 
• Autonomous individuals act intentionally, with
  understanding, and without controlling influences

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Doctors Obligations

• Create the conditions necessary for autonomous
  choice
• Patients do not have the necessary background or
  information for making informed choices
• Educate patients so that they understand the
  situation adequately
• Calm emotions and address fears that interfere
  with a patients ability to make decisions
• Counsel patients when their choices seem to be
  disruptive to health and wellbeing 

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Respect for Autonomy

• Includes
• confidentiality
• seeking consent for medical treatment and
  procedures
• disclosing information about the medical
  condition to patients/parents
• maintaining privacy
• respecting an individuals right to
  self-determination

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Examples of promoting autonomous behavior

• Presenting all treatment options to a patient,
  explaining risks in terms that a patient
  understands, ensuring that a patient understands
  the risks and agrees to all procedures before
  going into surgery or commencing treatment

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Beneficence

• Traditionally understood as the "first principle"
  of morality
• The ethical principle of doing good
• The ordinary meaning of this principle is the
  duty of health care providers to be of benefit to
  the patient
• This principle can be placed on a continuum with
  non-maleficence

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Obligatory and Ideal Beneficence

• Ideal beneficence comprises extreme acts of
  generosity or attempts to benefit others on all
  possible occasions
• Doctors are not necessarily expected to live up
  to this broad definition of beneficence
• The goal of medicine is to promote the welfare of
  patients

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Obligatory and Ideal Beneficence

• Doctors do have an obligation to
• 1) prevent and remove harms
• 2) weigh and balance possible benefits against
  possible risks of an action
• Beneficence can also include
• protecting and defending the rights of others
• rescuing persons who are in danger
• helping individuals with disabilities

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Examples of Beneficent actions

• Resuscitating a drowning victim
• Providing vaccinations for the general population
• Encouraging a patient to quit smoking and start
  an exercise program
• Talking to the community about STD prevention

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Balancing Autonomy and Beneficence

• Patients autonomous decision conflicts with the
  doctors beneficent duty
• Following each ethical principle would lead to
  different actions
• The patient must meet the criteria for making an
  autonomous choice (the patient understands the
  decision at hand and is not basing the decision
  on delusional ideas)
• then the doctor should respect the patients
  decisions even while trying to convince the
  patient otherwise

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Jehovahs Witnesses

• Believe that it is wrong to accept a blood
  transfusion
• Life-threatening situation where a blood
  transfusion is required to save the life of the
  patient,
• The patient must be informed i.e. the
  consequences must be made clear
• The physician may strongly want to provide a
  blood transfusion, believing it to be a clear
  "medical benefit."
• The patient is then free to choose whether to
  accept the blood transfusion
• in keeping with a strong desire to live
• in giving a greater priority to his religious
  convictions

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Non-maleficence

• Based on the Hippocratic maxim, primum non
  nocere, commonly translated as first do no harm
• Requires of us that we not intentionally create a
  needless harm or injury to the patient, either
  through acts of commission or omission
• Is sometimes interpreted to imply that if one
  cannot do good without also causing harm, then
  one should not act at all

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Non-maleficence

• Doctors should not provide ineffective treatments
  to patients as these offer risk with no
  possibility of benefit and thus have a chance of
  harming patients
• Doctors must not do anything that would purposely
  harm patients without the action being balanced
  by proportional benefit

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Examples of non-maleficent actions

• Stopping a medication that is shown to be harmful
• Refusing to provide a treatment that has not been
  shown to be effective

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Balancing Beneficence and Non-maleficence

• This balance is the one between the benefits and
  risks of treatment and plays a role in nearly
  every medical decision
• whether to order a particular test
• medication
• procedure, operation or treatment 

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Informed Consent

• Doctors give patients the information necessary
  to understand the scope and nature of the
  potential risks and benefits in order to make a
  decision
• Ultimately it is the patient who assigns weight
  to the risks and benefits
• The potential benefits of any intervention must
  outweigh the risks in order for the action to be
  ethical

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Justice

• Justice in health care is usually defined as a
  form of fairness
• as Aristotle once said, "giving to each that
  which is his due"
• Persons who have similar circumstances and
  conditions should be treated alike

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Distributive Justice

• This implies the fair distribution of goods in
  society and requires that we look at the role of
  entitlement
• The question of distributive justice also seems
  to hinge on the fact that some goods and services
  are in short supply, there is not enough to go
  around, thus some fair means of allocating scarce
  resources must be determined

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• The major ethical principles in NICU decisions
  are shown
• Each has a prominent influence and a legitimate
  claim to recognition
• Yet conflict among these principles is frequent
• For example, unqualified reverence for the
  sanctity of life may fail to acknowledge the
  requirement to do no harm, the burden of illness,
  or issues related to quality of life

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WITHHOLDING AND WITHDRAWING

• There are probably no other areas of medical
  decision making that are more difficult to
  consistently, compassionately and justly navigate
  than those where one course will inevitably lead
  to the demise of a patient
• .especially a childs life

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• objective consideration
• natural emotions of adults to protect the young
• absence or limited availability of a true and
  accurate knowledge of what the child might want
  for themselves
• very grey decision boundaries

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Wrestling with the unknowns

• Predicted outcomes
• Probability vs Certainty

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Consensus?

• The diversity of cultural beliefs can be a
  compounding factor
• Religious Beliefs
• Different philosophies

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Why should we need to consider withholding
treatment for a child?

• Is treatment futile?
• Is it so burdensome as to make it unacceptable?
• Is it likely to result in very severe disability
• surely it cannot be in the patients best
  interests?

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Futility

• OXFORD dictionary futile useless,
  ineffectual, in vain
• No Chance situation
• A Child has such severe disease that
  life-sustaining treatment delays death without
  significant alleviation of suffering

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Great Expectations

• Prognosis/Chance of Cure vs Burden of Treatment
• Doctor, Child and Family
• 2nd course chemo and bone marrow transplant for
  relapsed AML post treatment for Non-Hodgkins
  Lymphoma
• Decisions often produce unexpected results!
• Answers often only in retrospect

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No Purpose

• Although the patient may be able to survive
  with treatment, the degree of physical or mental
  impairment will be so great that it is
  unreasonable to expect them to bear it.
• SMA type 1
• What is unacceptable impairment or disability?
• Disabled community

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When should discussions take place?

• Child with a chronic condition
• The acute presentation
• an unfamiliar care team and a pressure of time
  following an acute event
• Newborn with a congenital abnormality
• Motor accident with a head injury

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When should discussions take place?

• In both scenarios deliberations may be hindered
  by a pressure of time
• Informed consent is next to impossible to achieve
• Implications can often not be considered with any
  degree of objectivity by a family suddenly faced
  with one of these scenarios, without time
• the very commodity which is not available

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Who should participate in the process?

• The right people
• Older children it is important to respect their
  autonomy, and very careful consideration should
  be given to including them in discussions
• Can a child who is fully competent to understand
  the issues be the primary decision maker with the
  support of their parents and the care team?

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Who should participate in the process?

• Legal and moral arguments that support the
  childs right to confidentiality
• Whatever the case for respecting the childs
  autonomy it is unlikely that the childs
  guardians will be excluded from discussions with
  life-limiting implications
• The child wishes to decline providing consent for
  a life sustaining procedure, whilst their parents
  assent
• The ages and mechanisms for this vary between
  various countries

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Decision makers regarding NICU intensive care are
depicted, with complex interactions between and
among them. No one member of the complex is
always in charge.
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The process of consent

• (1) The patient/guardian taking the decision must
  be provided with the key facts
• regarding the expected course of proceeding
  with treatment and of following all the
  alternative courses.
• (2) This information must be provided in an
  understandable form both in terms of language and
  syntax.
• (3) The decision makers must have the ability to
  retain this information for long
• enough to complete the next stage.

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The process of consent

• (4) They must have the cognitive ability to
  consider all the options and decide on their
  preferred course.
• (5) In order to complete the process they must
  communicate back to the clinician their decision
  in a clear manner. Crudely, if a clinician is
  confident that (s)he has provided the appropriate
  information then (s)he may test successful
  completion of this pathway by asking the
  patient/guardian to not only express their wishes
  but also to explain why they chose the option
  they did. To be confident it is preferable that
  explanation be delivered in the patients own
  words, and not a word for word repetition of the
  initial explanation.

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How should the decisions be taken?

• Sometimes requests may be impractical or
  unreasonable but should be considered
• Offer the family appropriate time to grieve
  before removing advanced support from their child
• Hastening in resource- restricted settings
• Demoralizing to the staff working on PICU

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Implementation

• Far from simple
• Practical problems can be huge
• Where agreement is reached not to resuscitate a
  child it must be widely communicated and crystal
  clear in the patients notes
• Meticulous handover

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DNR Orders

• Administration of CPR to a person with an agreed
  do-not-resuscitate order must be considered at
  best a failure of the system and at worst an
  assault on the patient
• If the patient survives it may be difficult to
  halt the processes that follow

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Withdrawal vs Withholding

• Controversial for some
• The distinction is the perceived active nature of
  such a course
• Ethical viewpoint
• there is no moral difference between action and
  inaction where the agent bringing about the
  endpoint (death) is cognisant of the whole
  scenario and the outcome is the same
• little doubt that it feels different

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• What is withdrawal and what is euthanasia?
• One is lawful and the other is not

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Comfort

• During the dying process is important
• Double Effect
• says that its reasonable to administer a drug in
  order to maintain freedom from pain and
  discomfort even though that might foreshorten
  life, provided that the purpose of administration
  is for the former, not the latter

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As easy as ABC

• Autonomy
• Beneficence
• Confidentiality
• Do no harm Non-malifecence
• Equality - Justice
• Fairness