Course material

1. 300 Word Essay Discussion
Unformatted Preview Deciding for ‘Special’ Populations PHHE 435 and 535 Ethical Decision
Making for Health Professionals • Very young children – best interest, not substituted
judgement Dan Cabrera, Ph.D. dcabrera@niu.edu 815-753-0613 Module 5B Deciding for
Others Master of Public Health Program – Copyright ©. Board of Trustees of Northern
Illinois University. All Rights Reserved. • Older children – more complex – May have some
grasp of concepts – Ability to give consent – Not have maturity Older Children • Specific
nature of some conditions makes selection of parents as proxies difficult for physicians – ex.
drug abuse, sexual, pregnancy Photo Credit: tup wanders Deciding for Special Populations
Photo Credit: Pedro Ribeiro Simoes Photo Credit: Ramesh Lalwani Older Children Older
Children • Historically parents have had almost total control of minor children • Not
thought to have rights • Parents made all health care decisions • Movement to protect
welfare of children • Restrict demands parents could make on minor children • Not give
room for decision making Photo Credit: Pedro Ribeiro Simoes Photo Credit: Pedro Ribeiro
Simoes 1 Older Children Older Children • Currently, older minors are thought to be given a
major role in decisions affecting life – ex. decision of health care treatment • Parents do
have an interest in children • Parental guidance should not be disregarded entirely Photo
Credit: Lance Nellson Photo Credit: Ramesh Lalwani • When is it morally appropriate for
parents/proxy to have nothing to to with the decision? • When is it morally appropriate that
they share in decisions on health care? • Minimum age for Minors to make health care
decisions Photo Credit: Jon Phillips When is it Morally Appropriate Photo Credit: Jon Phillips
Older Children Decision-Making Capacity Criteria • Do not want to disenfranchise a child
capable of deciding • Do not want to force decision-making on a child not yet ready for it •
Understanding • Evaluation • Reasoning Photo Credit: Lance Nellson Photo Credit: Jon
Phillips When is it Morally Appropriate 2 Decision-Making Capacity Criteria •
Understanding – relevant information of treatment, can communicate to provider • Piaget
developmental scheme child not able to understand diagnosis, prognosis, impact of
treatment until age 11 Photo Credit: mirJoran Decision-Making Capacity Criteria Photo
Credit: Damian Gadal Decision-Making Capacity Criteria Decision-Making Capacity Criteria •
Evaluation – framework of values to judge decision – good ? • Piaget, Kohlberg – mature
moral judgement has the capacity to make at about age 12 • What is good and bad? Not
Necessarily Cognition Moral Development Photo Credit: Enokson Decision-Making Capacity
Criteria Decision-Making Capacity Criteria • Reasoning – Deliberate/reason number of
options (all) and possible outcomes • Capacity to reason abstractly at age 12 – deductive

2. reasoning – consider numerous options, generate hypotheses, make conclusions, test
against experience Cause Effect Photo Credit: Sjaak Photo Credit: DFID – UK Department for
International Development 3 Decision-Making Capacity Criteria Decision-Making Capacity
Criteria • Capacity to reason abstractly at age 12 – reason simultaneously about alternative
treatments and risk associated with each • Below age 12, children may not have the
capacity to make health care decisions • Parents/proxy must do it for them Photo Credit:
Phillppe Put Photo Credit: DFID – UK Department for International Development Decision-
Making Capacity Criteria Emancipated Minors • What role do parents play in the health care
decisions of children 12-18 ? • When would parents/proxy not have authority to make
health care decisions ? • • • • Photo Credit: Tammy McGary Photo Credit: YWAM Orlando No
longer living at home Supporting themselves Marriage Entry into military • Ambiguous –
college students living away, yet being supported – minor who runs away from home •
Accepting consent from minors for treatment of sexually transmitted diseases, drug abuse,
and prenatal care is legally acceptable in many states • Why ? Photo Credit: Mike Mantin
Minor Treatment Statutes Photo Credit: matthew Hunt Emancipated Minors 4
Contraception • Allow sexually active unmarried minors to give consent for contraceptive
medical interventions • Might generate some debate Photo Credit: haleybean91 Abortion
Contraception • 1979 – Supreme Court issued opinion that required states to consider
pregnant minors too immature to give authentic informed consent for abortion to provide
alternative procedure not force minor to seek parental consent Photo Credit: Phil Roeder •
Contraceptive sterilization • Most physicians /people would find this morally objectionable
Photo Credit: haleybean91 Minors Deciding • What was the procedure ? • Minor appears
before judge who determines whether minor has capacity to give informed consent • Trend
allowing minors to make own decision has good and bad features from an ethical point of
view: Photo Credit: Phil Roeder Abortion Photo Credit: Banalities 5 Minors Deciding
Gradual Transition Minors Deciding Parent Participation Parent Participation • There are
many situations where good ethics suggest the participation of parent • Even though minor
may have achieved decisionmaking capacity • Making decisions for minors 12-18 requires a
great deal of prudential reasoning Photo Credit: VSPYCC • 1) Parents usual proxies for
children without capacity unless behavior disqualifies them from making decisions Parent
Participation • 2) Parents make decisions for older minors with qualified substitute
judgement and best interest standards: Photo Credit: VSPYCC Parent Participation Photo
Credit: Pablo.ezeklel • Bad • Impact it has on the legitimate interest of parents to care for
their children Photo Credit: VSPYCC • Good • Bad • Recognizing • Notion of autonomy
increasing capacity of and selfmaturing minor to determination limited accept
responsibility value for life • Lack of maturity and experience 6 Parent Participation • 2)
Parents make decisions for older minors with qualified substitute judgement and best
interest standards: – Few minors have expressed preference – best interest of patient and of
others in the family Photo Credit: VSPYCC Photo Credit: VSPYCC • 2) Parents make decisions
for older minors with qualified substitute judgement and best interest standards: – Few
minors have expressed preference Parent Participation • 3) When children start to achieve
some capacity to understand and consent voluntarily, parents should include to degree
possible • 4) When minors have achieved capacity, parents should still play a role in

3. decision-making unless not constructive Photo Credit: VSPYCC Parent Participation Photo
Credit: VSPYCC Parent Participation • 5) Occasionally responsible parents want to make
informed refusal of normal life saving treatment for children – Ex. Refusal of Blood
Transfusions • Court orders the treatment • Removes child from parents custody
(temporary) and appoints guardian to give consent • Supreme court decision (Prince vs.
Massachusetts — Martyr Photo Credit: Abir Anwar Court Involvement Photo Credit:
VSPYCC Parent Participation 7 Deciding for the Mentally Ill Deciding for the Mentally Ill •
Important moral questions ? – Is it moral to place the mentally ill in institutions against
their will simply because they might harm themselves or others ? • Important moral
questions ? – Is it moral to force treatment on them against their will ? Photo Credit: Karl-
Ludwig Poggemann Photo Credit: Karl-Ludwig Poggemann Deciding for the Mentally Ill
Deciding for the Mentally Ill • Important moral questions ? – Is their informed consent truly
voluntary if we have made it clear to them that they will be confined to an institution if they
do not accept treatment ? • Definition of mental illness ? • Physicians have considerable
leeway in diagnosing patient’s behaviors Photo Credit: Karl-Ludwig Poggemann Photo
Credit: Karl-Ludwig Poggemann Three important Issues MI and Decision-Making Capacity •
Relationship between mental illness and decisionmaking capacity • Decision to
commit/restrain the mentally ill against their wishes • Decisions to treat the mentally ill
against their wishes • Many MI individuals have not been found incompetent by legal
system • Retain decision-making capacity • If lost it, may be temporary • Capacity is task
specific (joke) 8 MI and Decision-Making Capacity MI and Decision-Making Capacity •
Physician has to determined whether patient is able to: – Understand – Evaluate – Reason –
Give consent freely • MI often does affect one or more of these criteria – ex. Schizophrenia –
ex. Severe depression Photo Credit: ryan melaugh Decision to Commit • Decisions by
proxies to commit mentally ill persons are both morally and legally difficult • Detention, not
treatment • Need strong reason for it • Danger to themselves • Danger to others Photo
Credit: Fayez Closed Account Decision to Commit Conclusion Photo Credit: Ben Seldelman 9
Imagine PHHE 435 and 535 Ethical Decision Making for Health Professionals Dan Cabrera,
Ph.D. dcabrera@niu.edu 815-753-0613 Module 5A Deciding for Others Photo Credit:
Kamaljlth K V Master of Public Health Program – Copyright ©. Board of Trustees of
Northern Illinois University. All Rights Reserved. Photo Credit: Rolands Lakis Objectives
Proxy (Surrogate) • Deciding on a medical proxy • Standard for making decisions • Deciding
for special populations • Makes decision for patient who has lost decisionmaking capacity
Photo Credit: Kathryn Three Essential Components Three Essential Components •
Understanding • Evaluation • Reasoning • Any one compromised, don’t have decision-
making capacity Photo Credit: U.S. Army Photo Credit: Chelesea Nesvig 1 Who Decides
Capacity? Who Decides Capacity? • Who decides presence/absence of decision-making
capacity ? • Lacks capacity • Lacks capacity in a limited way – Does patient have capacity to
decide treatment/time particular Photo Credit: Open Knowledge Photo Credit: meesh Who
Decides Capacity? Who Decides Capacity? • Physician must identify proxy – Already
designated – Identify appropriate proxy if one not designated • Is proxy serving the interest
of the patient ? • Ultimate responsibility is to the patient ….. Photo Credit: Sean MacEntee
Photo Credit: dreamingofariz Who Decides Capacity? • Patient Designated Proxy • Family

4. Member Proxy Photo Credit: dreamingofariz Patient Designated Proxy • Patient specifies
while still having capacity Photo Credit: dreamingofariz 2 Family Member as Proxy •
Physician needs to identify • Share decision-making • Provide informed consent Family
Member as Proxy • Spouse • Parent(s) • Adult Children Photo Credit: dreamingofariz Photo
Credit: dreamingofariz Family Member as Proxy Significant Other • Does relative closeness
guarantee knowledge of one’s wishes ? • Physician must ask….. – Why would patient
want/not want intervention • May have better idea than family member if little recent
contact • What if there is conflict with family members ? Photo Credit: Pedro Ribeiro Simoes
Proxies must … Proxies must … • • • • • • • • Know/care about patient Aware of patient’s
desires Available Willing to become informed Photo Credit: Pedro Ribeiro Simoes
Know/care about patient Aware of patient’s desires Available Willing to become informed –
diagnosis – prognosis – Treatments – side effects – risks Photo Credit: Pedro Ribeiro Simoes
3 Court Appointed Court Appointed • None available • Conflicts between family members,
ask for inappropriate treatment • Guardian health care decisions • Guardian’s decision has
priority over any other proxy • Can challenge, but not overrule Photo Credit: Nathan Laurell
Photo Credit: Nathan Laurell Court Appointed example Court Appointed • Can become very
complicated changing the complexity of case • Jane Doe -• 33 years old • Canavan’s Disease
– deteriorating CNS – irreversible • Had been institutionalized SMR Photo Credit: Nathan
Laurell Photo Credit: Nathan Laurell Court Appointed example Court Appointed example •
No indication of awareness • Physicians needed informed consent to perform surgical
procedure (gastrostomy tube) • Parents refused to give consent Photo Credit: Nathan
Laurell • Institution sought support from court • Court appointed three representatives for
Jane Doe Photo Credit: Nathan Laurell 4 Court Appointed example Court Appointed example
• 1) Lawyer (legal interest) • 2) Guardian of her person (for as long as guardianship is in
effect) • 3) Guardian ad litem (for particular case) • Guardian of her person and Guardian ad
litem requested to have existing nasogastric feeding tube withdrawn • Judge agreed Photo
Credit: Nathan Laurell Court Appointed example • • • • Photo Credit: Nathan Laurell Court
Appointed example Lawyer did not agree, challenge State Supreme court affirmed lower
court decision Adversarial relationship Demonstrates how one issue can be displaced by
another Unexpected developments Recourse to courts Photo Credit: Nathan Laurell •
Seriously ill abandoned child Massachusetts • Physicians thought DNR order would be best
• Department of Social Services (DSS) disagree • Took to court, MDs ask to allow to enter
DNR order • Appointed guardian ad litem sided with DSS, child’s lawyer • Judge ruled DNR
order to be entered in medical chart Photo Credit: Seattle Municipal Archives Judges as
Proxies Photo Credit: Seattle Municipal Archives Judges as Proxies 5 Judges as Proxies •
Condition of child changed • Even physicians felt DNR order should be removed • Judge
refused to cancel • Judge found that if competent, the child would still not want to be
resuscitated • The judge(s) became the proxy decision maker for the child • Massachusetts
Supreme Court agreed Photo Credit: Seattle Municipal Archives Photo Credit: Seattle
Municipal Archives Judges as Proxies Judges as Proxies • Parent had abandoned child • State
assumed legal custody • Judge was quite active, took a decisive role in overruling other
proxies • Did it for refusing medical treatment Photo Credit: Seattle Municipal Archives
Photo Credit: Seattle Municipal Archives Judges as Proxies Standards for Decisions (Proxy)

5. Judges as Proxies Photo Credit: Seattle Municipal Archives • Also for ordering treatment –
against parents with decision-making capacity – ex. blood transfusion and religious beliefs –
demonstrates state’s interest in protecting child’s well-being • What guide(s) do we have ? –
Substituted Judgement – Best Interest PatientCentered Photo Credit: John Barrie 6
Substituted Judgement and Best Interest Standards for Decisions (Proxy) • Both widely
understood and accepted in health care ethics • Both easily compatible with the ethics of
right reason • Reasonable treatment PhysicianCentered Photo Credit: llmicrofono Ogglono
Reasonable Treatment Substituted Judgement • Not so widely recognized • • • • Wishes of
the patient prevails Proxy just reports the wishes of the patient Carries out the treatment
plan How does the proxy know what the patient wants(ed) • Standard of Substituted
Judgement Photo Credit: llmicrofono Ogglono Substituted Judgement (limited role) • Was
told directly/written • Imply from comments • Patient never discussed relevant situation,
however, revealed enough values and thinking (weak basis) Substituted Judgement •
Substituted Judgement is sometimes used even for those who never had the decision-
making capacity or • Those that never specified what they wanted 7 Substituted Judgement
Substituted Judgement • How justified for withholding/withdrawing treatment? • 1. Judge
claim that the patient would have decided to forego treatment if he could have decided to
forego the treatment Substituted Judgement Substituted Judgement • 2.The law supports
right of selfdetermination/privacy, right to refuse treatment • Even if patient is not able to
assert them • Perhaps it might be better to not see every decision as a form of substituted
judgment • Best interest might be legally relevant Best Interest Best Interest • Interest of
the patient, what will benefit (net) the patient – All things considered • Is the treatment
more of a burden than a benefit? – Ex. antibiotics for terminally ill patient Photo Credit:
Sharada Prasad CS 8 Best Interest Best Interest • Best interest judgement • What will truly
benefit the particular patient? Reasonable Standard • What if patient never gave any
indication of desires ? • What if patient does not have any interest ? • Can be overridden –
triage Reasonable Standard • When proxy cannot rely on first two standards: – 1) some
permanently unconscious patient (decide to withdraw life sustaining treatment) Photo
Credit: Peter Stevens Reasonable Standard • When proxy cannot rely on first two standards:
– 2) some incapacitated dying patient kept on life support to preserve organs for
transplantation (may decide to continue lifesustaining treatment) Photo Credit: Peter
Stevens Reasonable Standard • Permanently unconscious – no longer have any interest –
beyond benefit or burden – will never again feel anything Photo Credit: Peter Stevens 9
Reasonable Standard • Permanently unconscious – no longer have any interest • No cogent
reason to treat • Many reasons not to treat PVS • Continued treatment no possible benefit •
No burden to withdraw Reasonable Standard • Override the substituted judgement – PVS
patient who had expressed desire to have heart surgery – Should proxy follow through on
substituted judgement ? Photo Credit: Peter Stevens Reasonable Standard Photo Credit:
Peter Stevens Continue • Incapacitated Organ donors • Baby’s life preserved for benefit of
organ recipients • Not substituted judgement or best interest of baby • Ethical decision ? –
No suffering – Shortage of baby organs Photo Credit: Tracy Sorensen 10