Ethical and Legal Aspects of Advanced Care Planning (ACP)

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Module II

• Ethical and Legal Aspects of Advanced Care
  Planning (ACP)

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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

• 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.

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Introduction (cont)

• 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.

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Ethical concepts underlying ACPdecision-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)?

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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.
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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.

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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.

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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.

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Beneficence

• A moral obligation to act for the benefit and in
  the interests of others.
• Often balanced by the need to avoid risk and to
  fulfill obligations to self and others.
• Linked to principle of utility, which requires a
  balance of benefits and drawbacks to produce best
  overall results.

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Non-maleficence

• 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.

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In cases such as that of Mrs. W

• 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.
• Withdrawal of life-sustaining therapies
  (non-maleficence) may be appropriate when they
  are no longer beneficial or desirable for the
  patient and produce negative outcomes.

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Rule of Double Effect (RDE)

• 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

• The act must be beneficial.
• The person carrying out the act must intend only
  the good effect.
• The bad effect must not be a means to the good
  effect.
• Benefits of the good effect must outweigh those
  of the bad effect.

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Example of Rule of Double Effect

• Administering medication to relieve pain and
  suffering which may also produce decreased
  respirations and hasten time of death.

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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.

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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.

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Distributive Justice

• 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.

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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
  life-threatening co-morbidities does not improve
  after a trial period of hemodialysis.

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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 patients overall status and life
  goals.

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What Patients Care About When Making ACP Decisions

• Dialysis patients have identified the following
  as important
• Receiving adequate pain and symptom
  management
• 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.

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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.

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Timing of ACP Decisions

• 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.

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Factors Affecting Decision-Making and
Communication

• Cultural, ethnic and age-related differences in
  approaches to decision-making.
• 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.

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Determination of Capacity

• 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.

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Role of Surrogate or Proxy

• These designated decision-makers accept the
  responsibility of carrying out the patients
  expressed wishes and also upholding the
• substitute judgment standard,
• using knowledge of the patients beliefs and
  values to make care decisions which could not
  have been anticipated.

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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.

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Federal Initiatives AffectingEnd-of-Life
Decisions

• 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
  Self-Determination Act requires that patients be
  informed of their rights to accept or refuse
  treatment and to specify care decisions in
  advance of possible incapacity.

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Judicial Decisions Affecting End-of-Life Care

• 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.

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Examples

• Karen Quinlan (New Jersey, 1976)
• Baby K (U.S. Circuit Court, 1994)
• Nancy Cruzan (Missouri, 1990)
• Terri Schiavo (Florida, 2002)

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Why is it ethically important for patients to
make ACP decisions

• Family members often do not have adequate
  knowledge of the patients wishes without
  previous discussions about specific end of life
  choices.
• The principle of autonomy or the right to make
  decisions about ones own life is highly valued
  in U.S. culture and underlies our legal approach
  to end-of-life-decisions.
• Legal challenges to appropriate care are
  minimized with anticipated and documented end of
  life choices.

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State Initiatives AffectingEnd-of-Life Decision
Making

• State Law Patients right to specify wishes in
  advance has been codified into statute in 47
  states.
• Statutory documents used in advanced care
  planning are described and defined in state
  statute.
• Web resources such as www.caringinfo.org
• can be used to access specific state
  documents supporting advanced care planning.

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Types of ACP Directives

• 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.

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Types of ACP Directives (cont)

• 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)

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Living Wills

• 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.

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Durable Power of Attorney for Healthcare/ Health
Care Proxy (HCP)

• 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.

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Allow a Natural Death or Do Not Resuscitate
Order (DNR)

• Advantages
• - Accepted by physicians and health care
  facilities
• in every state.
• - Can be initiated through patients 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.

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Withholding/Withdrawing of Treatment

• 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 patients death
  once
• decision is made.

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Example Tool to Convert Patient Wishes into
Physician Orders

• The POLST Form a standardized medical order
  form citing patient wishes for life-sustaining
  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/EthicsStan
  dards/Codeofethicsfornurses.apx

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Principles Guiding Nurses to Facilitate Advance
Care Planning

• 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.

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Principles Guiding Nurses to Facilitate Advance
Care Planning

• 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.

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Resources

• 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 

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Additional Web Resources

• www.caringinfo.org
• www.ohsu.edu/ethics/polst
• www.che.org/ethics
• www.bioethics/gov