Ethical and Legal Aspects of
Advanced Care Planning (ACP)
Objectives
Identify ethical and legal principles underlying
ACP decisions in the U.S.
 Describe the factors which influence patients
as they make ACP decisions.
 Identify ethical nurse behaviors to assist
patients and families as they make ACP
decisions.
 List 2 resources available to assist patients in
making and documenting ACP decisions.
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Introduction
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All individuals make life decisions based on
their own values, beliefs, culture, religion and
life experiences.
Access to life-sustaining technology creates
the need to make decisions about initiation or
withdrawal of therapy.
Health care professionals also bring their own
values and beliefs about the appropriateness
of therapy.
Introduction (cont)
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Conflicts surface when there is disagreement
about when therapies should be used.
Ethical principles assist patients and health
care providers to make appropriate decisions
based on the needs and wishes of the
patient.
Legal decision-making also includes the use
of ethical principles when conflicts cannot be
resolved through discussion or mediation.
Ethical concepts underlying ACP
decision-making include…
Autonomy or self-determination
Beneficence
Non-maleficence
Justice
Futility
Substitute judgment
What do these mean in the context of
Advanced Care Planning (ACP)?
Clinicians use these principles in
assisting patients to make the right
decisions for themselves.
Each of these concepts are rarely
used alone, but balance each
other to guide an ethical conduct
of care.
Consider this situation…..
Mrs. W., a 72 year old widow, is a Type 2 diabetic
with COPD and history of transient ischemic
attacks. She has been on chronic hemodialysis for 5
years.
Following a dialysis unit initiative to offer ACP to
all new and current patients, Mrs. W. initiates this
conversation with her primary nurse.
Mrs. W. has strong opinions favoring limitation of
life-sustaining therapies if she is judged to be in an
irreversible and terminal condition.
However, her only daughter resists this decision,
fearing the potential loss of her mother and wishing
to maintain her life despite the possibility of a future
poor prognosis.
Supporting Mrs. W to make decisions which
honor her own beliefs and wishes recognizes
the role of ….
Autonomy (Self-Determination)
The moral and legal right of a person with
decisional capacity to determine what
will be done with their own person.
This respects the right of each person to make
decisions regarding their own body and
course of life.
And Mrs. W.’s story continues…
Mrs. W. is brought to the ED after suffering a
cerebral vascular accident at home.
Shortly after admission and before studies can be
done to assess the degree of her condition, she
experiences a respiratory arrest.
The ED team initiates artificial respiration in an
attempt to forestall cardiac standstill and is
successful. After a few moments, Mrs. W. is
breathing independently and transferred to the ICU.
Later that night, Mrs. W. again suffers respiratory
failure. Unsuccessful attempts are made to restore
breathing, and an endotracheal tube is inserted and
artificial respiration is initiated.
Beneficence
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A moral obligation to act for the benefit and
in the interests of others.
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Often balanced by the need to avoid risk and
to fulfill obligations to self and others.
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Linked to principle of utility, which requires a
balance of benefits and drawbacks to
produce best overall results.
Non-maleficence
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A moral obligation not to inflict harm
intentionally.
Usually balanced with beneficence, in
that obligations not to harm others
(non-maleficence) are sometimes more
stringent than obligations to help them
(beneficence) and visa versa.
In cases such as that of Mrs. W……
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Initiation of life-saving measures may be
indicated (beneficence) if there is uncertainty
about the outcomes of therapy and how much
benefit there will be for the patient.
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Withdrawal of life-sustaining therapies (nonmaleficence) may be appropriate when they
are no longer beneficial or desirable for the
patient and produce negative outcomes.
Rule of Double Effect (RDE)
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This is used to support acts that may have two
effects, one intentional and the other possible,
but not intentional.
Four conditions justify an ethically permissible
act:
1. The act must be beneficial.
2. The person carrying out the act must
intend only the good effect.
3. The bad effect must not be a means to
the good effect.
4. Benefits of the good effect must
outweigh those of the bad effect.
Example of Rule of Double Effect
Administering medication to relieve
pain and suffering which may also
produce decreased respirations and
hasten time of death.
Consider what ethical principle is
violated when…..
Patients receive preferential attention or
care based on ethnic, racial or economic
characteristics.
OR
Patient care decisions are based solely on
previous social history or impressions made
by caregiver staff during prior interaction
with the patient.
Justice
Fair, equitable, and appropriate treatment in
light of what is due or owed to persons.
An injustice involves a wrongful act or
omission that denies one benefits to which
they have a right or distributes burdens
unfairly.
Distributive Justice
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Fair, equitable and appropriate distribution of
resources based on justified norms.
Sometimes an issue in provision of dialysis
services when resources are limited.
In these cases, decisions may be based on an
assessment of medical utility or the expected
benefit of treatment for individuals.
What principle describes situations in which…
A comatose patient receiving life-sustaining
therapy has a poor prognosis for recovery and is
assessed to be in constant pain.
OR
The condition of a patient with several lifethreatening co-morbidities does not improve after a
trial period of hemodialysis.
Futility
A situation in which providing treatment
produces burdens which far outweigh
benefits in providing that care.
Implementation of any treatment that cannot
achieve a therapeutic benefit for the patient
in light of the patient’s overall status and life
goals.
What Patients Care About When
Making ACP Decisions
Dialysis patients have identified the following as
important:
* Receiving adequate pain and symptom management
*
*
*
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Avoiding inappropriate prolongation of dying
Achieving a sense of control
Relieving burden on loved ones
Strengthening relationships with loved ones
Singer, P.A., Martin, D.K. & Kelner, M. (1999). Quality End-of-Life Care:
Patients’ Perspectives. JAMA, 281(2), 163-168.
Family Preferences in Making
ACP Decisions
Further research has shown that:
Family
members often lack the knowledge of patients’
values and preferences when functioning as surrogate
decision makers.
Written and oral instructions by the patient assisted to
match surrogate decisions with patient wishes.
ACP as facilitated by the health care team is most
effective and less threatening when conducted in
stages, first encouraging general discussion.
Hines, S., Glover, J., Babrow, A., Holley, J., Badzek, L., & Moss, A. (2001).
Improving Advance care Planning by Acomodating Family Preferences.
Journal of Palliative Medicine, 4(4), 481-489.
Timing of ACP Decisions
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Initial discussions can occur as early as
initiation of ESRD treatment.
General discussion can occur first – who
surrogate should be, who should be included
in decision making, etc.
All decisions should be periodically revisited,
especially after acute illnesses.
ACP is an ongoing process, and patients have
the right to “change their mind.”
Factors Affecting Decision-Making and
Communication
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Cultural, ethnic and age-related
differences in approaches to decisionmaking.
Capacity or ability to comprehend
information, contemplate options, evaluate
risks and consequences, and communicate
decisions as determined by clinicians
(articulate benefits and burdens).
Competence or ability to make decisions as
determined legally by a court of law.
Determination of Capacity
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At times, patients are legally competent but do
not have capacity to make all health care
decisions.
Clinician determination of capacity are
documented in the medical record according to
facility/state protocols.
In these cases, decisions are made by proxy or
surrogate (person previously determined by
patient to make health care decisions) or by
family members as determined by law.
Role of Surrogate or Proxy
These designated decision-makers accept
the responsibility of carrying out the patient’s
expressed wishes and also upholding the
substitute judgment standard,
using knowledge of the patient’s beliefs and
values to make care decisions which could
not have been anticipated.
Rule of Thumb
Rightness or wrongness of an action
depends on the merits of the justification
underlying the action, not the action itself.
Every situation needs to be evaluated in its
own context, so that patients, families and
caregivers can achieve comfort and trust in
the final decisions.
Federal Initiatives Affecting
End-of-Life Decisions
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US Supreme Court, 1990 – upheld the right to
self-determination, including patients no longer
able to direct their own care, stating that
decisions for incompetent persons should be
based on previously stated wishes.
Federal law, 1991 – The Patient SelfDetermination Act requires that patients be
informed of their rights to accept or refuse
treatment and to specify care decisions in
advance of possible incapacity.
Judicial Decisions Affecting
End-of-Life Care
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When end-of-life decisions are not able to be
made with agreement among all involved
parties, the state judicial system is frequently
used as a last resort.
In some cases, suits invoking federal laws may
be heard in federal courts.
Thus, “case law” develops and informs future
court decisions for similar cases.
Examples
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Karen Quinlan (New Jersey, 1976)
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Baby K (U.S. Circuit Court, 1994)
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Nancy Cruzan (Missouri, 1990)
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Terri Schiavo (Florida, 2002)
Why is it ethically important for
patients to make ACP decisions
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Family members often do not have adequate
knowledge of the patient’s wishes without previous
discussions about specific end of life choices.
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The principle of autonomy or the right to make
decisions about one’s own life is highly valued in
U.S. culture and underlies our legal approach to
end-of-life-decisions.
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Legal challenges to appropriate care are minimized
with anticipated and documented end of life choices.
State Initiatives Affecting
End-of-Life Decision Making
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State Law – Patient’s right to specify wishes in
advance has been codified into statute in 47 states.
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Statutory documents used in advanced care
planning are described and defined in state statute.
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Web resources such as www.caringinfo.org
can be used to access specific state documents
supporting advanced care planning.
Types of ACP Directives
1.
2.
Living Will – describes the type of treatment
an individual desires in certain situations
(ventilation, nutrition, etc.)
Durable Power of Attorney for Health Care –
designates a spokesperson for the patient
when he/she is unable to make and/or
communicate medical decisions.
Types of ACP Directives (cont)
3.
4.
Do Not Resuscitate (DNR) Order or Allow a
Natural Death – patient direction not to initiate
cardiopulmonary resuscitation if breathing or
cardiac function ceases (may be initiated from
contents of living will).
Withholding or Withdrawing of Treatment e.g. dialysis, antibiotics, hydration, nutrition,
other therapies)
Living Wills
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Advantages
- Allows specific documentation of treatments
desired in specific situations.
- Establishes clear and convincing evidence of
patient wishes
- Can be easily changed by patient over time.
Limitations
- Does not include surrogate decision maker.
- Does not provide guidance for unanticipated
situations.
Durable Power of Attorney for
Healthcare/ Health Care Proxy (HCP)
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Advantages
- Decisions able to be made by chosen proxy in case
of incapacitation.
- Covers all unanticipated decision needs not
included in living will.
Limitations
- Requires frank and detailed discussion between
patient and proxy, which is often difficult to initiate.
- Some individuals may not have access to
someone close enough to serve this function.
Allow a Natural Death or
Do Not Resuscitate Order (DNR)
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Advantages
- Accepted by physicians and health care facilities
in every state.
- Can be initiated through patient’s verbal request –
forms available in health facility.
Limitations
- Only relates to incidence of pulmonary and cardiac
dysfunction (does not cover other problems).
- Must be renewed on regular basis through
discussion with MD.
Withholding/Withdrawing of Treatment
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Advantages
- Outlines wishes for specific treatments.
- Demonstrates personal beliefs re circumstances in
which burdens outweigh benefits.
- Trial period for selected therapies offers families
time to adjust to severity of condition and probable
futility of further treatment prior to withdrawal.
Disadvantages
- May require multiple decision points along illness
trajectory.
- Family must be ready for patient’s death once
decision is made.
Example: Tool to Convert Patient
Wishes into Physician Orders
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The POLST Form – a standardized medical
order form citing patient wishes for lifesustaining treatment.
Carried by patient at all times or kept in medical
record if patient is institutionalized.
Implemented or partially implemented in several
states and can be used legally in case of
incapacitation.
Visit below address for more information.
www.nursingworld.org/MainMenuCategories/EthicsStandard
s/Codeofethicsfornurses.apx
Principles Guiding Nurses to
Facilitate Advance Care Planning
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The relationship between a patient and nurse is
one of competence, compassion, support and
advocacy.
Prevention and relief of suffering as well as
provision of comfort to the patient and family are
critical when facing end-of-life issues.
Ethical issues can occur in caring for the
nephrology patient, often presenting difficult
dilemmas.
Principles Guiding Nurses to
Facilitate Advance Care Planning
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Conflicts in making end-of-life decisions can best
be resolved using a foundation of ethical
practice and facilitation.
Resources available to nurses in understanding
standards of ethical practice include:
* the ANA Code for Nurses,
* the Nurse Practice Act in each state, and
* Ethics Committees available in most
healthcare institutions.
Resources
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American Nurses Association Code of Ethics at
www.nursingworld.org/ethics/ecode.htm
End-of-Life Module #1 (2005) - go to
www.annanurse.org
RPA/ASN publication, Shared Decision-Making in
the Appropriate Initiation and Withdrawal from
Dialysis – go to www.kidneymd.org
Additional Web Resources
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www.caringinfo.org
www.ohsu.edu/ethics/polst
www.che.org/ethics
www.bioethics/gov