Laura Guidry-Grimes, PhD

Assistant Professor of Medical Humanities & Clinical Ethicist

University of Arkansas for Medical Sciences and Arkansas Children’s Hospital
Disclosures

 I have no relevant disclosures or conflicts of interest.

 All cases have been deidentified and anonymized.

Clinical Ethics Consultation Service

Available 24/7/365

Page 501.405.8134

Anonymous consults permitted

 Case: Melissa

 Melissa, 12, is brought into the ED after her sister Gracie, 8, called
911 when Melissa started bleeding profusely at home. The
paramedic reports that the children were home alone.

 Dr. McKinney assesses that Melissa is having profuse vaginal

bleeding, and a vaginal exam is critically necessary to make sure
that Melissa does not have a life-threatening condition.

 When Dr. McKinney tries to get Melissa to agree to the exam,

Melissa screams, “Don’t you look down there! I don’t want that!
Stop it!”
Adapted from JAMA Ethics Case, “Can a Minor Refuse Assent for Emergency Care?”
(not emergency conditions, not pediatric case)
Standard Consent

Solicited from competent and capacitated patients

 If over 18 years of age, presumed capacitated until proven otherwise
 Might need capacity assessment(s) for specific decisions
 Could authorize someone else (waive & transfer decision-making)

OR from authorized surrogate decision-maker

 Guardian, healthcare agent (POA), family, friends, other invested parties
 “What would the patient want in these circumstances?” – ideal
 First: What to Check

 Decisional capacity (choice-specific)

1. communication of stable choice +
2. understanding +
3. reasoning +
4. appreciation

 Voluntariness
 freedom to choose – no undue influence or coercion
Appelbaum, 2007; Beauchamp & Childress
If the Patient Cannot Provide Consent:
Ethical Criteria for a Surrogate

 Capacitated

 Reasonably available (at least over the phone)

 Willing to serve as a surrogate

 Willing to make decisions consistent with a) pt’s known

wishes and values and b) pt’s overall interests
Case Scenario: Ms. Suarez and Her Niece

 Ms. Suarez is in the ED for shortness of breath and heart

palpitations. She has advanced dementia and lives in a
nursing home with hospice. She lacks decisional capacity for
all decisions.

 The ED physician finds a POLST form that indicates the patient

is DNR, but the patient’s niece is currently bedside and asking
that Ms. Suarez be full code while admitted to the hospital.

 The ED physician is unsure whether to admit Ms. Suarez and

calls for an ethics consult.
Standard Consent

 Three Elements
1. Disclosure
Potential risks, benefits, viable
alternatives – made comprehensible
PROCESS,
2. Conversation NOT a single event
Adequate ability and opportunity to
have questions answered

3. Authorization
Informed Refusal?

 Moral and legal right for any capacitated patient to refuse

any medical intervention, even those that would extend life
or prevent medical deterioration.
 Rights to privacy and bodily sovereignty

 Should ensure decision is informed, voluntary, and with understanding

-- as with consent (Beauchamp & Childress, Principles of Biomedical Ethics)
Ethically, What Matters Here?

 Autonomy and liberty rights

 Protection against coercion, deception

 Respecting individual as individual

 Building trust, therapeutic alliance

 Help to minimize/manage risks and harms, especially those

that matter the most
Standard Consent

Official form,
witness signature,
signed provider’s statement Asking for trust,
engaged communication,
enabling autonomy
(but not in pediatric cases yet)
 Noteworthy Differences

Emergency Practice Primary Care Practice

Patients brought by ambulance, police, etc. Patient decides when to see physician.

Patient does not choose physician. Patient chooses physician.

ED personnel do no know patient, family, values, Physician and nurses often know patient.
etc.
Anxiety, pain, alcohol, and altered mental status Anxiety, pain, alcohol, and altered mental status
are frequent. are less frequent.

Decisions are made quickly. There is more time for discussion and deliberation.

Work environment is open and less controlled. Work environment is private and controlled.

Adapted from Ethics in Emergency Practice, 2nd ed. Galen Press Ltd, 1995.
 In the ED, but…

EMERGENT CONDITION ? NON-EMERGENT CONDITION ?

Follow process as laid out Follow standard

in EMTALA, local laws, informed consent
hospital policy… process
AND DO NECESSARY
TESTING AND TREATMENT
Emergent Condition?

 “a situation in which, in competent medical judgment,

the proposed surgical or medical treatment or
procedures are immediately or imminently necessary and
any delay occasioned by an attempt to obtain a consent
would reasonably be expected to jeopardize the life,
health, or safety of the person affected or would
reasonably be expected to result in disfigurement or
impaired faculties”

(AR Code 20-9-603)

Emergent Condition?

 “When any emergency exists, there has been a protest or refusal

of consent by a person authorized and empowered to do so,
and there is no other person immediately available who is
authorized, empowered, or capable of consenting but there has
been a subsequent material and morbid change in the
condition of the affected person.”

 Properly authorized and informed refusal  expected change in

medical state  generally respect refusal (but details matter)

 Properly authorized and informed refusal  UNEXPECTED change in

medical state  if cannot obtain consent/refusal in light of changes,
and situation is emergent, treat emergently (AR Code 20-9-603)
The Emergency Exception:
Wait, Why Is This Ethically OK?

 Implied Consent
 Presumably, a reasonable person in these circumstances would
want to be saved from preventable death, injury, impairment

 Role-specific obligations of ED staff

 Special resources and skills to rescue
 ED as safe harbor for those who need immediate attention,
regardless of ability to pay or availability of capable decision-
maker
If unaccompanied…

 Emergent conditions?
 Err on side of testing and treating emergently
 Best interests of the child & implied consent of the
parent/guardian

 Non-emergent conditions?
 things get trickier…
 Unaccompanied minor
in non-emergent condition

 Try to reach parent/guardian in most cases

 Suspected abuse or neglect?  CPS, law enforcement could

have authority to consent on behalf of pt

 Minor can consent for self if

 emancipated or
 considered to have sufficient intelligence to understand and
appreciate consequences of proposed treatment (mature minor) or
 seeking help for certain medical conditions (e.g., contraception, STIs)
AAP Committee on Pediatric Emergency Medicine and Committee on Bioethics, 2011
(AR Code 20-9-206(7))
Privacy and Confidentiality

 Ethically, important for building trust, supporting developing

autonomy, could prevent additional harms

 However…
 AR law does not explicitly protect the confidentiality of minors (but
allows confidentiality for female minors re: procreation)

 SO this should be discussed with minor who seeks medical assistance

and wants to avoid their parent/guardian being informed 
transparency and honesty
If accompanied by parent/guardian…

 Emergent condition?
 Try to secure consent from parent/guardian, unless
delaying would put pt at increased risk of harm

 If time permits, start by going through informed consent

process with parent/guardian
 Ensure decision is capacitated
informed
voluntary
with understanding
Case Scenario: Jack and His Father

 Jack, 14, was climbing trees and fell from a considerable height.
He presents to the ED in significant pain with potential broken ribs
and a broken arm.

 Jack’s father asks the ED physician just to send them home with
some pain medication. He does not want the ED physician to
perform any more testing, since “it’s too much money” and “x-rays
will give my son cancer.” The physician notices that the father is
slurring his words and seems intoxicated.

 Jack tells the physician that he just wants to go home with his
father, but he wants the pain to stop. The physician calls Ethics and
a security guard to make sure Jack’s father doesn’t try to leave with
the patient.
Parental Permission

 Ethical difference between

surrogate making decision on behalf of an adult with
known wishes and values
and
parent/guardian making decision on behalf of a minor

 Consider short- and long-term welfare interests of the minor,

current preferences, capacity for future agency and identity
formation
 Familial bonding and identity
 Privacy rights and value pluralism in raising children
 Assent

 “Pediatricians should not necessarily treat children as

rational, autonomy decision makers, but they should give
serious consideration to each patient’s developing
capacities for participating in decision-making”

 “If physicians recognize the importance of assent, they

empower children to the extent of their capacity”

AAP Committee on Bioethics, 1995

 Elements of Assent

1. Helping the patient achieve a developmentally appropriate

awareness of the nature of his/her condition

2. Telling the patient what he or she can expect with tests and
treatment(s)

3. Making a clinical assessment of the pt’s understanding of the

situation and the factors influencing how he/she is
responding (incl. whether there is inappropriate pressure to
accept testing or therapy)
AAP Committee on Bioethics, 1995
 Elements of Assent

4. Soliciting an expression of the pt’s willingness to accept

the proposed care.
 In soliciting the pt’s views, you are committing to weighing
those views seriously.

 In situations in which the pt will have to receive medical care

despite his/her objection, the pt should be told that fact and
should not be deceived.

AAP Committee on Bioethics, 1995

 Dissent

 If a patient persistently objects to the proposed

tests/treatment, this matters ethically – even if the pt is a
minor
 Especially for research or treatment that is not essential to
child’s welfare, and reasonable alternatives (including
deferral) are possible

 Should at least pause to gain better understanding, try to

build trust – coercion and deception as last resort

AAP Committee on Bioethics, 1995

What If the Parent/Guardian Refuses to
Give Consent?

 Ethically, those responsible for the care of a child are supposed to

act in the best (“good enough”) interests of the child
 Cannot make a martyr of their child or otherwise neglect fundamental
interests

 Barriers to informed consent? Rupture in therapeutic relationship?

Communication barriers?

 If the parent/guardian persists in the refusal of medically necessary

treatment, consider the harm principle
 The Harm Principle:
Justification for State Intervention with Parental Decision-Making

 By refusing to consent are the parents placing their child at significant risk of serious harm?
 Is the harm imminent, requiring immediate action to prevent it?
 Is the intervention that has been refused necessary to prevent the serious harm?
 Is the intervention that has been refused of proven efficacy, and therefore, likely to prevent
the harm?
 Does the intervention that has been refused by the parents not also place the child at
significant risk of serious harm, and do its projected benefits outweigh its projected burdens
significantly more favorably than the option chosen by the parents?
 Would any other option prevent serious harm to the child in a way that is less intrusive to
parental autonomy and more acceptable to the parents?
 Can the state intervention be generalized to all other similar situations?
 Would most parents agree that the state intervention was reasonable?
Diekema, 2004
Returning to Melissa….

 Is Melissa’s assent ethically necessary?

 If no parents or guardians can be found, how should the

ED team proceed?

 What are some strategies that the medical team could

try for handling this tricky situation responsibly?
Clinical Ethics Consultation Service

Available 24/7/365

Page 501.405.8134

Anonymous consults permitted

LGuidryGrimes@uams.edu