Navigating Advance Directives
Charles Hite
Director of Biomedical and Research Ethics, Retired
Carilion Clinic
Objectives
• Review the definition of ethics and the rise
of bioethics in the modern era
• Discuss basic principles guiding ethical
practices in health care, especially end-oflife care
• Explain the role -- and limitations -- of
advance directives in guiding health care
What Is Ethics?
• Ethics is the study of how to determine the best
course of action when faced with conflicting
moral choices. These choices often involve
moral principles, religious beliefs or professional
guidelines. In health care settings, patients,
families and providers sometimes face difficult
decisions that involve personal convictions
about life, health, suffering and death. Ethical
problems or dilemmas have no single correct
answer. The nature of these problems is that
valid arguments can be made for different
courses of action and different outcomes.
In other words….
What should I do?
Birth of Modern Bioethics
Dates to the Early 1960s
• Medical Technology – Dialysis
Committees
• Changes in Medicine – Rise of the
Specialist
• Social Climate – Civil Rights,
Consumerism
• Medical Research Scandals - Tuskegee
• Congress Mandates Research Review
Boards
Ethical Principles
• Respect for Persons: Autonomy,
Privacy
• Beneficence
• Non-Maleficence
• Justice
Ethical Practices
For Every Patient Encounter
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Assessing Decision-Making Capacity
Providing Informed Consent
Respecting Confidentiality and Privacy
Truth telling and Shared Decision- Making
End of life in America Today
• Modern health care
• only a few cures
• live much longer with chronic illness
• dying process also prolonged
• > 90% Protracted Life Threatening
Illness
• predictable steady decline with a relatively
short “terminal” phase
• cancer
• slow decline punctuated by periodic crises
• CHF, emphysema, Alzheimer’s-type dementia
Slow decline, periodic crises,
sudden death
Factors Influencing EOL Care
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Advances in technology
Aging Population
Lack of Professional Knowledge
Disputes about decision making
Cultural/Religious/Spiritual Values
Court Cases/Fear of Litigation
Reluctance to Discuss Death
Denial of Death
• What tormented Ivan Illych most was
the deception, the lie, which for some
reason they all accepted, that he was
not dying but was simply ill, and that he
need only keep quiet and undergo a
treatment and then something very
good would result.-- Leo Tolstoy, The Death of
Ivan Illych
Ethical Issues
in End-of-Life Care
Foregoing Life-Sustaining Treatment:
Killing or Allowing to Die?
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Karen Ann Quinlan: 1976
Dax Cowart: 1978
Elizabeth Bouvia: 1986
Nancy Cruzan: 1990
Hugh Finn: 1998
Terri Schiavo: 2005
Withholding/Withdrawing
• Patients have right to refuse treatment or ask
that it be stopped, even if life-sustaining
• Surrogates can also ask to stop or withdraw
treatment if based on patient’s wishes
• Refusing or stopping life-sustaining treatment
is not considered euthanasia
• Supreme Court’s 1990 Cruzan decision
upheld this right but also said state’s may set
standards about patient wishes
More Ethical Issues ….
• Overconfidence in CPR
• Artificial Food and Water: Must This
Always Be Given?
• What is “Futile” Treatment?
• Who Decides When the Patient Can’t?
The Use and Abuse of Advance
Directives
CPR/DNR Facts
• Fewer than 10-15 % of all hospitalized
patients survive CPR and return to their
previous state. Most live a short period but
still die in the hospital.
• Almost no one with cancer who has CPR
survives to leave the hospital
• Only 1 to 4 % with multiple chronic
illnesses survive hospital stay
Artificial Nutrition/Hydration Facts
• Most appropriate when patient has
temporary condition that prevents
swallowing
• Can help patients regain strength until
eating and drinking by mouth is possible
• Possible burdens: infections, restraints,
pain
• May not prolong survival for patients with
advanced illness, dementia
• Refusal does not mean “starving to death”
Ethical Issues: Medical Futility
• Interventions that will not achieve
the intended result
• Conflicts re: benefit/burden of
treatment
• Often involve communication
failures
• Limits of usefulness of prognostic
data and policies
Ethical Issues: Advance Directives
• Documents or oral declarations that allow
patients to participate in medical decisionmaking when they have lost the ability to
make or communicate decisions about
their own health care.
Va. Health Care Decisions Act
• Provides for “written advance directive
authorizing the providing, withholding or
withdrawal or life-prolonging
procedures” when there is a terminal
diagnosis. Also now allows other
instructions to be given about nonterminal treatment.
• Provides for appointment of an “agent
to make health care decisions” under
circumstances stated in directive when
patient is incapable
Living Will Language
• If at any time my physician determine that I have
a terminal condition where the use of lifeprolonging procedures would only prolong the
dying process, I direct that life -prolonging
procedures be withheld or withdrawn. I also
direct that I be permitted to die naturally with
only administration of medication or the
performance of any medical procedures deemed
necessary to provide me with comfort care or to
alleviate pain.
Changes in Advance Directive Law
• Give Instructions about All Forms of Health
Care, Not Just End of Life Care
• Second Physician Not Needed to Declare
Incapacity In Some Cases
• Agent Can be Given Power to Make
Decisions over Patient’s Objections
• Allows Patient to Make a “Ulysses Contract”
• Only Person Who Signs DDNR May Revoke
• Added A New Surrogate: “Friend” of Patient
Who Makes Decisions for Patient?
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Durable Medical Power of Attorney
Legal Guardian
Spouse
Adult Children
Parents
Adult Brothers and Sisters
Other Blood Relatives
Friend who knows patient values
5 Reasons Living Wills Don’t Work
• It sounds like a good idea but…. Only 20 to 30
percent have them….Most prefer to let family decide.
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It’s nearly impossible to predict future medical
preferences.
• The format and language of living wills is either too
broad to be helpful or too complex to allow patient’s
to articulate what they really want.
• Living wills aren’t around when you really need them.
• Living wills apply in limited circumstances;
surrogates and providers don’t do a very good job
interpreting (or even paying attention to) living wills.
See: A. Fagerlin and C. Schneider, “Enough: The Failure of the Living Will,”
Hastings Center Report 34, no. 2 (2004): 30-42
Rand Study for HHS
“There is little connection between the
completion of an Advance Directive and
subsequent appropriate outcomes of care
such as improved communication…,
greater concordance between patient
preferences and proxy reports of patient
preferences, reductions in aggressive
care, appropriate palliation, or preferred
place of death.”
Literature Review on Advance Directives prepared for Office of Disability, Aging and
Long -Term Care Policy, U.S. Dept of Health and Human Services, June 2007
More from Rand Study
“ Generally, the research suggests that even
when Advance Directives are executed,
physicians are frequently unaware of
them, ADs are not easily available to
surrogates when needed, ADs are too
general and/or are inapplicable to clinical
circumstances, and/or they are invoked
late in the dying process or are at times
overidden by providers and families.”
Impossible to Predict Future
When people become incompetent and seriously ill, …their
interests may radically change. With their reduced mental
and physical capacities, what was once of extreme
importance to them no longer matters, while things that were
previously of little moment assume much greater
significance. ...It is difficult, if not impossible, for competent
individuals to predict their interests in future treatment
situations when they are incompetent because their needs
and interests will have so radically changed. As a result, the
directives they issue for future situations of incompetency,
though they reflect their current needs and interests, may
have little relevance to their needs and interests once they
become incompetent.
• Dresser and Robertson; Law, Medicine and Health Care, 17
(1989): 234-244
What’s the Answer?
Advance Care Planning:
A process to “help adults plan for unexpected
event, such as sudden illness or injury, that
renders them incapable of making healthcare
decisions and from which they are unlikely to
recover.” This process provides an opportunity for
adults to express goals, values, and beliefs about
living well and to offer guidance to those who will
be making healthcare decisions on their behalf.
Respecting Choices: Advance Care Planning Facilitator Course, Chapter 2, 2007
Advance Care Planning
Initiating a discussion about end-of-life issues for
patients with chronic, progressive illness and
their families need not focus initially on making
decisions or on forgoing treatment. It can be a
time simply to explore attitudes and provide
information. Beginning advance care planning
early in the course of chronic, progressive illness
can provide opportunities for ongoing and
gradual conversations to slowly engage patients
and their loved ones in participating in the
planning process.
Respecting Choices: Advance Care Planning Facilitator Course, Chapter 4 2007
What Tool Is Effective?
Physician Orders for Scope of Treatment:
The POST form is an advance care
planning document targeted to seriously ill
patients that can travel with the patient.
The wishes of the patient are translated
into physician orders.
National Quality Forum
Preferred Practice
“Compared with other advance
directives programs, POLST more
accurately conveys end-of-life
preferences and yields higher
adherence by medical professionals (p
43).”
National Quality Forum. A National Framework and Preferred Practices for Palliative
and Hospice Care Quality: A Consensus Report. Washington, D.C.:
National Quality Forum, 2006.
Obstacles to Discussions About
End-of-Life Care
• Patient waiting for physician to initiate
• Poor communication by medical
personnel
• Family members feel “guilt”, “giving up”
• Cultural, Religious beliefs
Key Points
• Document wishes about end-of-life care
and discuss with family, physician
• Good advance care planning is an
ongoing process, not a single event
• Be willing to try time-limited trial of
treatment to meet goals, then stop if
goals aren’t met