The Continuum
of Advance Care Planning
Kathie Supiano, PhD, LCSW
Associate Professor
University of Utah College of Nursing
Effective Communication:
The intersection between
empathic listening & imparting
knowledge that creates a
respectful, productive
professional relationship.
Advance Care Planning
The process that aims to inform and
facilitate medical decision making that
reflects patients’ preferences in the
event that patients cannot
communicate their wishes.
Communicating effectively with patients
and families has been regarded as a core
skill in Palliative Care.
• Assurance that medical information and
treatment options are conveyed in ways patients
and families comprehend intellectually and
process psychologically.
• Care plans and goals of care are continually
evolving, and communication methods must
address the reality of change at inflection points
the disease process.
The trajectories of
chronic illness:
• Provide
parameters for
discussion, and
• Identify disease
inflection points
Communication responsibilities
in palliative care
• Know the patient’s medical issues; options of
care and the possible outcomes of each.
• Know the patient: personal history, values,
hope and goals.
• Inform the patient with honesty, cultural
awareness, sensitivity, and conveying a
sense of presence and accessibility.
• Guide (vs. direct) the process of decisionmaking.
Questions to begin the
conversation
• What is your understanding of your
present state of health?
• What decisions have you made
thusfar?
Leading to…..
• What are your goals of care?
• What is your definition of quality of
life?
Common expressions stated
in goals of care discussions:
•
•
•
•
•
“No heroics.”
“Don’t keep me alive if I am a vegetable.”
“Don’t keep me alive on machines.”
“If I am terminal, let me go.”
“Do nothing.”
Explore these statements further and
invite the patient to clarify meaning
Discussion of goals of care
with a healthy adult
• Surrogate decision maker.
• Goals of care if one permanently loses ability
to know who and where they are.
• Any conditions considered worse than death.
• Identify who will be available to care for
individual, and under what circumstances.
• Any religious or cultural personal beliefs that
influence EOL treatment preferences.
www.gundluth.org/eolprograms
Discussion with adult with
new, life-limiting condition
• To begin or continue life-sustaining
treatment if:
• No longer able to think for self, recognize
others or communicate.
• Permanently dependent for all needs.
• Permanently unconscious or vegetative state.
• Functional status, co-morbidities, or very
advanced age.
Caring Conversations-Making your wishes known for End of Life care
www.practicalbioethics.org
Center for Practical Bioethics, Kansas City, MO
Discussion with an adult with a
chronic, progressive disease
• How to balance living longer with quality of life;
looking forward to any special events.
• Any concerns or worries about disease or
needs of caregivers.
• Any needs, services, information required for
current or anticipated care.
• The meaning of what it is to live well now or in
future circumstances.
www.gundluth.org/eolprograms
Discussion with adult with
end-stage disease; anticipated
death in the next year
• Any story/experience with end-of-life care.
• Any activities that are important to
maintain or fulfill.
• Consider when to proceed with lifesustaining treatment and/or move toward
focus of comfort.
• Desired location of death, funeral
preferences identified.
www.gundluth.org/eolprograms
Benefits versus Burdens
Benefits can be defined as:
• Effective in prolonging life.
• Effective in restoring/maintaining
function.
• Promotes goals/values of
patient.
• Consistent with religious/cultural
beliefs.
Benefits versus Burdens
Burdens can be defined as:
• Results in more or intolerable
pain/symptoms.
• Damaging to body image or
function.
• Psychologically harmful.
• Unacceptable cost for the patient.
“I felt it shelter to speak to you.”
Emily Dickinson