Advance Directives

&
Surrogate Decision-makers:
Rights & Responsibilities

Barbara Tournier, MSN,RN,MBE

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Pennsylvanias Advance Directive for Health
Care Act governs the use of advance directives.
An Advance Directive becomes effective only if:

a once competent individual subsequently

becomes incompetent or
is diagnosed by the attending physician as

being permanently unconscious or in a

terminal condition.

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Requirements
for use of Advance Directive
The primary care or attending physician
and a second physician, must confirm
this diagnosis, in a patient over 18, or
is an emancipated minor

Only then can the attending physician

or health care provider act on the
patients Advance Directive.
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 Importantly,
The health care provider must act in
accordance with the Advance Directive

or pursuant to a conscience clause,

transfer the patient to another health
care provider who will institute the
Advance Directive.

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 Guiding principle: Autonomy

Why is Advance Care Planning important?

Builds trust when ones wishes about health

care decisions are documented

Helps to avoid confusion and conflict within

the family

Permits peace of mind for the patient

and the family.
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 Topics to consider
Pain management
Artificial nutrition and hydration

CPR (Cardiac-Pulmonary Resuscitation)

Mechanical ventilation (being placed on a

ventilator to assist breathing / a form of life
support that may be temporary or permanent)
Blood transfusion
Dialysis

The EPEC Project, 1999, ww.epec.net

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 Types of Advance Directives

1 ) Durable power of attorney for health care

Most important element of advance care

planning is authorization by the patient
of a person who will make decisions on his
or her behalf in case of mental incapacity.

This person is commonly identified as the

designated or surrogate decision-maker.

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Additional types:

2 ) Advance Directive, also called: Directive to

Physicians
Example: Five wishes document

3 ) Living Will (less formal document)

Since 1990, (Patient Self-Determination Act) hospitals

must ask all patients, when admitted, for a copy of their
Advance Directive. It usually is placed on the chart to
guide decision-making if the patient loses their ability
to participate in decision-making.
.
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 Elicit patients values and goals
Describe potential patient situations
Examples:
Suppose you were very sick in the hospital.
Would you want our focus to be more on your
comfort or on your living longer?

Suppose your liver failure progressed. Would

you want to go to the intensive care unit, or
prefer to receive care at home but risk living a
shorter time?
The EPEC Project, 1999, ww.epec.net

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 Points to consider
Advance care planning can reduce
family burden

Family members may not always be the

best surrogate decision-maker.

Focus on what kind of care is desired

(a pro-active decision) rather than
what should be withdrawn (reactive).
The EPEC Project, 1999, ww.epec.net

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 Role of

Surrogate Decision-makers

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Guidelines for Surrogates
When a patient has not specifically

stated what he/she would want,

a surrogate should base a decision on
familiarity
with the patients values and beliefs.
Jonsen, Siegler, Winslade (2010)

*** These appointed surrogates supercede

any others in decision-making,
including immediate family members.

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Primary responsibility:

Surrogates must be careful to avoid

the common pitfall of injecting
their own values and beliefs
into the decision-making process.

Only the patients values and beliefs

are relevant to this Substituted
Judgment decision.

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 Standards for
Surrogate Decision-makers

Substituted judgment when the patients preferences

are known, the surrogate must use knowledge of
these preferences in making medical decisions.

Best interest standard when the patients preferences are

not known, the surrogates judgment must promote the best
interest of the patient.

Jonsen, Siegler, Winslade (2010)

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 Substituted Judgment
In effect, the surrogate is not making
medical decisions for the patient,

but is merely voicing the decision the

patient would have made for him / herself.

This was recognized in the landmark

legal case of Karen Ann Quinlan (1976).

Jonsen, Siegler, Winslade (2010 )

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 Best Interest Standard
If the patients own preferences are unknown or
unclear the surrogate must consider
the best interests of the patient.
The surrogates decision must promote the patients
welfare, concerning
1) relief of suffering
2) preservation or restoration of function
3) extent and sustained quality of life
In this situation, the surrogate makes the decision that
reasonable persons in a similar circumstances would
be likely to choose.
Jonsen, Siegler, Winslade (2010))

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 Emergency Guardian is needed
If failure to appoint a guardian would result
in irreparable harm to the patient
concerning health care decisions

Emergency guardian:
has powers outlined in court decree for

decision-making
may be appointed for 72 hours, with an

extension up to a total of 20 days

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 If a Guardian is required:
Court requires a hearing to determine whether
there is clear and convincing evidence that
the patient is unable to receive and evaluate
information effectively and communicate
decisions so as to be unable tomeet
essential requirements for his physical health
and safety.

Guardian must assert rights and best interests

of the patient and must respect expressed wishes
of patient to the greatest extent possible.

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 Emergency Medical Treatment & Labor Act
In 1986, Congress enacted this law (EMTALA) to:

ensure public access to emergency services regardless of ability

to pay.
imposes specific obligations on Medicare-participating hospitals

that offer ER services to provide a medical screening when a

request is made for examination or treatment for an emergency
medical condition, including active labor,
Hospitals are then required to provide stabilizing treatment for

patients
If a hospital is unable to stabilize a patient within its capability, or

if the patient requests it, an appropriate transfer to another

hospital should be implemented.

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 Implied Consent

Applicable in emergency situations in which the

patient is incapable of giving or refusing consent.
It is presumed that the patient would want care to
ease pain or treatment to save their life.

If a patient refuses consent, but lacks the mental

capacity for decision-making, an emergency
guardianship should be considered through the
court system.

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 Refusal of Consent
May be exercised by anyone with the
capacity to consent

Applies to all treatments, including

life-sustaining treatment

May be exercised by surrogate decision-

maker on behalf of patient

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Pennsylvania laws set forth hierarchy of consent only for:
Autopsy & Organ Donation

Typical Hierarchy of Consent

1) Written authorization of patient before he / she

became incapacitated
2) Person authorized in writing as patients
designee for this purpose
3) Adult children
4) Adult grandchildren
5) Parents
6) Brothers or sisters
PA Autopsy Consent 35 P.S. Sec. 1111

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 Exceptions to Minors Inability to Consent

If minor has graduated from high school, has

ever been pregnant or has ever been married

A 14 year old minor may consent to mental

health treatment

A 17 year old minor may consent to donating

blood

Any minor may consent to testing or treatment

for a STD (sexually-transmitted disease)
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Lessons from the Terri Schiavo Case
Try to resolve matters outside of court
and out of media spotlight
Assistance in resolving issues is available
from:
- Social Workers
- Ethics Committee
- Clergy
- Attorneys with Bioethics expertise
- Bioethics mediator
Martha Schwartz, JCD

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