End of Life
Planning Ahead
Rotary International
North Charleston
October 22, 2012
Sewell I. Kahn, MD FACP
End of Life Planning
Objectives
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Define Death
Discuss the choices that one has in end of
life (EOL) planning
Explore the role of patients and family
Review SC advance directives and EOL
planning discussions
Introduce the role of palliative and hospice
care
Uniform Determination of Death

Act established by three organizations;
identified criterion for death

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Irreversible cessation of all circulatory and
respiratory functions
Irreversible cessation of all functions of entire
brain, brain stem
Inevitability of Death
“No one wants to die. Even people who
want to go to heaven don’t want to die to
get there. And yet death is a destination
we all share. No one has ever escaped it.
And thus is as it should be, because death
is very likely the single best invention of
life. It is life’s change agent.”
Steve Jobs:Stanford
Commencement address 2005
Percent of total US deaths from
Infectious vs. chronic disease
70
60
50
40
30
20
10
Modified from
S. Rehman, MD
0
1900
1980
% Deaths Infx
% Deaths Chronic
Cancer vs. Non-Cancer Illness
Trajectories to Death
Cancer
30 MONTHS
Decline
End-organ disease
Crises
Death
Time
Field & Cassel, 1997
Medical Advances
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Antibiotics
Chronic Illness Drugs (Heart, Diabetes, Cancer,
Hypertension and More)
Kidney Dialysis
Organ Transplantation
Cardiac Resuscitation and Support
Respirators
Artificial Feeding and Hydration
Physicians’
Role

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Cure and control disease and to prolong
life
Relieve suffering
Educate patients and families about their
choices regarding EOL care
EOL Concerns

Too much care - using technology when it
may not be in patients’ best interest

Too little care - not using technology when
it is in the best interest of the patients
Experts
EOL

Patient: Expert of his/her values, goals
and preferences
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Physician: Expert on medical means for
honoring patient’s perspective
Advance Directives

A legal document either telling how you
want to be treated or who will make
medical decisions for you if you do not
have the capacity to tell them yourself.

Surrogate, healthcare agent or healthcare
proxy
End of Life Planning
Barriers (1)

Planning too late
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40-96% lack capacity to make decisions
Illness, stress, medications may hamper thinking
processes
Unexpected illness and accidents
Low rates of advance directive completion
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15-30%
No discussion
Not available
End of Life Planning
Barriers (2)
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Aversion to talking about death
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Patients
Physicians
Lack of healthcare time and training
2 conversations
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Advance Directives
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Patient
In relatively good health
Near EOL
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Patient or Surrogate
Critically Ill
Advance Directives: Living Will
South Carolina
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Specific situations
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Specific patient’s instructions
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Permanently unconscious
Terminally ill
Life sustaining treatment
Artificial feeding and hydration
Provision to designate a person to:
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Enforce
Revoke
Advance Directives: Healthcare
Power of Attorney
South Carolina
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Has the power to make all healthcare
decisions for you if you cannot make them
for yourself
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All treatment and diagnostic procedures
Life sustaining treatment
Hydration and nutrition
Admission and discharge decisions
Other
Healthcare Power of Attorney
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The surrogate needs to know the patient’s
values
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If there is both a living will and healthcare
power of attorney, the living will instruction
must be followed
Planning Documents
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Five Wishes
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http://www.agingwithdignity.org/forms/5wishes
.pdf
Values History
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http://hsc.unm.edu/ethics/valueshistory.shtml
Five Wishes
General
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Close to death
Coma and not expected to wake up
Permanent and severe brain damage and not
expected to recover
In each of these situations:
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Want to have life-support treatments
Do not want life-support treatments
Want to have life-support treatments if the doctor believes
it could help, but stop if it is not helping.
Five Wishes (1)
Wish 1:
The person that I want to make healthcare
decisions for me when I cannot make
them myself.
 Wish 2:
My wish for the kinds of care I want or
don’t want.
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Five Wishes (2)
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Wish 3:
My wish for how comfortable I want to be
Wish 4:
My wish for how I want people to treat me.
Wish 5:
My wish for what I want my loved ones to
know.
Advance Care Planning(1)
In Statewide Surveys over multiple years:

Approx.14%-29% have completed an
advance directive form
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Approximately 5% have no document but
have had conversations with family or
health care provider
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Approx. 60% Have done nothing
T. West; The Carolinas Center for Hospice and End of Life Care
Advance Care Planning (2)
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Less than 5% thought discussions should
happen at a medical crisis
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Approx. 40% believe they need more info
to make decisions
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Numbers were grossly unchanged from
year to year
T. West; The Carolinas Center for Hospice and End of Life Care
Advance Directives
General Comments (1)
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The advance directive is only valid if you do not
have capacity to make decisions
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The advance directive should be available when
needed. Copies:
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Personal medical record
Surrogate
Lawyer
Personal physician
Minister
Accompany patient to healthcare facility
Advance Directives
General Comments (2)
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It is NOT the HC power of attorney document that
speaks for you, but the person you appoint. Discuss your
needs, values and desires with that person.
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You may change or revoke all advance directives.
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If you have both a HC power of attorney and a Living
will, The surrogate CANNOT change the Living will
unless you have given power to revoke.
Advance Directives
General Comments (3)
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SC Law: If you do not specify in your living
will that you do not want food/ water you
WILL receive it.
Advance directives are not perfect
Advance directives are not doctors’ orders
Only apply when in a healthcare facility
Not portable
Advance Directives
Portable
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South Carolina EMS Do Not Resuscitate
Form
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Only for patients in poor health and unlikely to
benefit from resuscitation
Only a physician can obtain form for you
POLST
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Being developed in SC as POST
Doctor’s order
National POLST Paradigm Programs
Endorsed Programs
Developing Programs
No Program (Contacts)
*As of February 2012
When is POLST
Appropriate?
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Terminal illness
Advanced disease
Prognoses is death
within a year
Debilitating chronic
progressive illness
No Advance Directive
SC Law (1)
1. Court Appointed Guardian
2. Attorney in fact
3. A person given priority to make health care
decisions by another statutory provision
4. Spouse
5. Parent or adult child
No Advance Directive
SC Law (2)
6. Adult Sibling, Grandparent or adult Grandchild
7. Any other relative by blood or marriage that the
Health Care provider believes has a close personal
relationship to the patient
8. A person given authority to make health care
decisions by another statutory provision

In situations of emergency or if there is no one to consent in
certain situations the patient will be treated
Communication
2 conversations
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Advance Directives
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Patient
In relatively good health
Near EOL
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Surrogate
Critically Ill
Surrogate
Qualifications
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Willing
Needs to know patient’s preferences and
values
Honor and follow plan
Ability to make difficult choices
Available
How Surrogate
Decisions Will be Made
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Patient’s wishes
Substitute Judgment
Best Interest
Impact on Surrogates
1/3 have a negative emotional burden
 Much less negative if patient’s wishes are
known:
“Thank God Mom and Dad had a living will.
I am glad I was not the person making the
decision”
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End of Life
Communication
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Process; Not one time discussion:
 Understanding of the disease and the
prognosis
 Concerns about the future
 How they want to spend their time if limited
 What trade offs
Life sustaining support
Decisions
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Respirator (ventilator) support
Cardiopulmonary resuscitation (attempt)
Artificial Feeding
Blood pressure supporting drugs
Antibiotics
Kidney Dialysis
Life sustaining support
Decisions
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Quality of life
Prognosis
Mental status
Overall physical status
Religious belief
Cultural belief
Communication Review of
Systems (C-ROS)
1.
2.
3.
4.
5.
6.
7.
Ability to Consent
Patient Voice
Physician Voice
Patient Understanding
Physician Understanding
Advance Directives
Decisions
SC Coalition for the Seriously Ill
Palliative Care

Palliative care is comprehensive,
interdisciplinary care designed to promote
quality of life by meeting the physical, social
and spiritual needs of patients living with a
serious or incurable illness.
Hanson; NC Med J 2004;65:202
Hospice

Hospice is a system of care that provides
palliative care and emotional support for
patients who are in an end of life situation
usually in a home or non-hospital setting.
There are inpatient Hospice Care programs for
patients who do not have adequate in home
support.
Conceptual Shift from “Curative Model”
Life Prolonging Care
Medicare
Hospice
Benefit
Life Prolonging
Hospice Care
Care
Palliative Care
Diagnosis
42
Death
Old
New
Conclusion
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End of life planning is not something that
should be left to chance.
Physicians, patients and families need to
take an active role in planning for the
inevitable
Curative treatment, control of chronic
illness and relief of suffering are All
important functions of modern health care
SC Coalition for the Care of the
Seriously Ill (CSI)
Charter Members
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South Carolina Medical Association
South Carolina Hospital Association
South Carolina Nurses Association
Carolinas Center for Hospice and End of Life Care
South Carolina Healthcare Ethics Network
South Carolina Society of Chaplains
LifePoint
AARP
SC Coalition for the Care of the
Seriously Ill (CSI)
Other Participants
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South Carolina Bar
Lt. Governor’s Office on Aging
EMS
SC Healthcare Association
Leading Age SC
SC Citizens Concerned for Life
SC DHEC
Various volunteers with expertise in specific areas such
as law,social work and legislation