Anthem Institute North Brunswick Health Care Decisions Essay

According to Devettere, when proxies make health care decisions for other people, they need to rely on some kind of standards to guide their judgment.  During Session 5, we described three standards for decisions by medical proxies: Substituted Judgment, Best Interest, and Reasonable Treatment.

Create a scenario where a proxy must make a decision for an incapacitated patient (ex. young/older child, senior citizen, mentally ill person), apply one of the standards and explain how its use supports an ‘Ethics of the Good’. Include a discussion of any relevant issues such as the severity of patient’s condition, cognitive/moral development of child, danger to self/others, etc.

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 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)
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
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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
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 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 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
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