Advance Care Planning

1. Advance Care Planning
Chaplain Steven Spidell, DMin, BCC
Director, Spiritual Care
Houston Methodist San Jacinto Hospital
Baytown, Texas

2. Medical Care and Cultural
Expectations
• If there is a medical treatment for a condition, it
must always be done
• Saving “life” must always be attempted
• Spare no expense
• Death is a failure of medical care
• Death is unacceptable
• Suffering has no meaning; should always be lessened
• Suffering has great meaning; should always be
accepted

3. Crises are unpredictable
• Life is uncertain – accidents and illnesses
• Need to have thought about what we would
want to do (or have done for us) should a
health emergency happen
• Need to have thought about what we would
want to do (or have done for us) when a
chronic condition becomes life threatening

4. Medical Models
I. Dualism: Body, SpiritSeparate, Not Connected
Medical treatment is intended
»to prevent physical illness
»to restore damaged bodies
»To preserve physical life

5. Medical Models
2. The Unified Theory: Mind=Body=Spirit
Medical treatment is intended
• To prevent illness through wholistic measures
• To restore damaged persons by treating body,
mind, and spirit
• To honor a person’s life with respect for his or
her wishes, values, and decisions

6. Illness is progressive
• Tendency to view illness as a one-time event
that can be taken care of.
• If an Illness involves major body systems
(heart, lungs, intestinal tract, liver, kindness,
etc.) and becomes chronic…
• …you will need to deal with this as
progressively worsening health condition that
could well lead to life-or-death situations

7. What do we want
at the end of life?
• Surveys reveal that most people want
–To die at home with family present, if
possible.
–Have their pain and symptoms controlled.
–Have their wishes known and honored.
–To be treated as a whole person, with
appropriate psychosocial and spiritual
support.

8. But what happens…
• Approximately 2/3 of us die in institutions such
as hospitals or nursing homes.
• Of those who are hospitalized at the time of their
deaths, the majority are isolated in intensive care
for long periods of time.
• Many are unconscious for several hours or even
days before their deaths. Of those who are
conscious, the majority report experiencing pain.
• Families are devastated emotionally and
financially.

9. …And what happens…
• 47% of physicians did not know that their
patient did not want CPR.
• Orders written at last minute… While 79% of
study participants died with a do-not-
resuscitate (DNR) order, 46% of those orders
were written within two days of death.
•

10. …And what happens.
• Time spent in ICU… A total of 38% of study
participants who died spent at least 10 days in an
intensive care unit (ICU) and 46% were put on a
mechanical ventilator within 3 days of death.
• Pain experienced…Half of all study participants who
died in the hospital and were conscious until their
deaths experienced moderate to severe pain at least
half the time in the last 3 days of life (according to
interviews with family members).

11. Healthcare Adapts to Patients’
Needs and Expectations
Shared Decision-Making
Patient-Centered Care
Relationship-Centered Care
Advance Care Planning

12. Shared Decision-Making
In order to ensure that each patient gets the treatment
that is right for him or her, the choice should be a shared
decision, involving both the patient and the clinician.
In the process known as “shared decision-making,” the
patient is a fully informed partner in the choice,
knowledgeable about the risk and benefit trade-offs of
each treatment option. When done right, shared
decision-making results in a better decision: a
personalized choice based on both the best scientific
evidence and the patient’s own values.
[Resource: Dartmouth Institute]

13. Patient-Centered Care
• Respect for patients' values, preferences, and
expressed needs
• Coordination and integration of care
• Information and communication
• Education for patients and providers eir diabetes
• Physical comfort
• Emotional support -- relieving fear and anxiety
• Involvement of family and friends.
[Source: Diabetes Association]

14. Relationship-Centered Care
Relationship-centered care is healthcare that
values and attends to the relationships that form
the context of care, including those among and
between practitioners and patients; patients as
they care for themselves and one another;…..
http://www.caringmatters.com/html/DefiningRCC.htm
Narrative Medicine – Co-development of the
patient’s story, diagnosis, and treatment

15. Advance Care Planning
• Advance Care Planning is a…
• process of communication between the
patient, the family/health care proxy, and
staff
• for the purpose of prospectively identifying a
surrogate,
• clarifying treatment preferences
• and developing individualized goals of care
near the end of life.
http://www.eperc.mcw.edu/EPERC/FastFactsIndex/ff_162.htm

16. Primary Goals of ACP
• Enhance patient and family education about
their illness, including prognosis and likely
outcomes of alternative care plans.
• Define the key priorities in end-of-life care
and develop a care plan that addresses these
issues.
• Shape future clinical care to fit the patient's
preferences and values.

17. Other Potential Benefits of the
ACP process
• Help patients find hope and meaning in life,
and help them achieve a sense of spiritual
peace.
• Strengthen relationships with loved ones.
Timing: At a minimum, ACP should be considered
whenever the health care provider would not be
surprised if that patient died within the next 12
months.

18. ACP Objectives
• Maximize the likelihood that medical care serves
patient’s goals
• Minimize the likelihood of over- or under-
treatment
• Reduce the likelihood of conflicts between family
members (and close friends) and healthcare
providers
• Minimize burden of decision making on family
members or close friends.

19. Having the
conversation

20. Critical Questions
to Ask your Doctor
• How will I know when my condition is
worsening?
• What signs and symptoms should I expect?
• Is frequent hospitalization a sign that my
illness has worsened to the point that I should
thinking about end-of-life issues?
• When is the right time to get a palliative care
team involved in my care?

21. Critical Discussion Points…
• What is your understanding of your illness?
• What does quality of life mean to you?
• What are you hopes?
• What, if any, are your fears? What are you
most afraid of?
• What would be left undone if you were to die
today?

22. Critical Questions
• Who would make decisions for you?
(=Proxy)
• NB This persons would have freedom is act
on your behalf in the midst of complex and
fluid situations.
• What are your goals for medical treatment?
• What would be your goals should you
sustain a permanent brain injury?

23. …Critical Discussion Points…
• Has faith been important to you at
specific times in your life?
• Can you imagine a time when it would
not be worth it to stay alive?
• Which symptoms bother you the most?
• What practical problems is your illness
create for you?

24. …Critical Discussion Points.
• Do you have effective methods for treating
your symptoms?
• Is there a specific resource to use (person,
place, thing) to help you feel better?
• If you have lost family members or other
loved ones, what was that like for you?
• Are there family members who need to know
what is going on? [Source: Heart Failure Society of America}

25. ICU Syndrome
• 30% of family members who have had a loved
one in ICU experience post traumatic
symptoms within 2-3 months
• Those whose loved ones had made clear their
wishes at the potential end of life were less
stressed.

26. There are indications of trauma when the
person has
•Few times of positive experience but a
continual reliving of the events surrounding the
loss.
•Memories of the past linger in the present.
•Predominance of unpleasant feelings, anxious,
tense, sorrowful, guilty, fearful, isolated,
disconnected from people. Unable to move
forward.
•Rare times of pleasure and enjoyment of life.

27. ACP Documents
• Advance Care Planning notes
• Advance Directive
• A do-not-resuscitate order
• Physician’s Orders for Life Sustaining
Treatment (POLST)
• A living will
• A power of attorney
• A financial plan

28. TAKE ACTION!
• Select your surrogate.
• “Have the conversation.”
• Complete the forms.
– Have witnessed or notarized.
• Make several copies.