This document discusses the importance of communication skills when discussing end-of-life care and advance directives. It emphasizes exploring patients' feelings, establishing trust, and focusing on hope. Key elements include acknowledging emotions, legitimizing concerns, and offering support. Discussions should explore uncertainty and include treatments' burdens and benefits to help evaluate options. The most important part of communicating advance directives is developing trust through active listening and understanding each patient's unique situation and perspective.

1. Going Beyond Advance
Directives to Honor Wishes
at the End of Life
Toni Norman, MS, RN
Area Vice President Hospice Operations

2. Objectives
• Demonstrate a clear understanding of the role of
communication in presentation of advance directives.
• Voice six key elements in establishing trust when
presenting advance directives.
• Assist in the decision making process by consciously
attending and responding to issues that may arise during
these discussions.
• Communicate with hope when talking about end of life
choices.

3. 3
Why do we look beyond Advance Directives?

4. ‘‘Do away with the suffering of the sick, to lessen the
violence of their diseases, and to refuse to treat
those, who are overmastered by their diseases,
realizing that in such cases, medicine is powerless.’’
4
According to Hippocrates,
the purpose of medicine is to

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Me and my dad

6. • Advance directives began to be developed in the
United States in the late 1960s. The First Living Will: In
1967, an attorney named Luis Kutner suggested the first
living will. Kutner's goal was to facilitate "the rights of
dying people to control decisions about their own
medical care.“
• Advance directive legislation has subsequently
progressed on a state- by-state basis. By 1992, all fifty
states, as well as the District of Columbia, had passed
legislation to legalize some form of advance directive.
6
History

7. In the United States, four out of every five adults have
no advance directive, a situation that some have
likened to taking your car to the mechanic and saying:
"I think it needs a tune-up, but if you find something
really wrong with it, just go ahead and fix it, even if it
won't run afterwards. And by the way, please charge me
for the work and if I can't pay for it, I'm sure my estate
will!"
7
Current Situation

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Facilitating end-of life decision making
frequently fails

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How Doctors Choose their own End-of-Life

10. • Living wills
• Durable power of
attorney for health care
• DNR
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Types of advanced directives are:

11. The American Heart Association states:
“The chance of surviving an out-of-
hospital cardiac arrest is near zero for a
victim who does not immediately
receive high-quality chest
compressions... followed by additional
therapy within minutes.”
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You need to know the facts when your talking
about advanced directives.

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Can I have my Advance Directive tattooed on my
chest?

13. • Medical devices to aid breathing
• Medical devices to provide food and water
• Cardiopulmonary resuscitation (CPR)
• Dialysis
• Blood transfusions
• Antibiotics
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Types Of Life Support Treatments

14. For each treatment, it's helpful to consider the
following questions:
•What purpose does this treatment serve?
•What are the side effects?
•Does this treatment usually improve overall health, or
does it simply extend life?
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How To Evaluate Life Support Treatments

15. • CPR is intended to ‘resuscitate the victims of an
acute insult, whether it be from drowning, electrical
shock, untoward effects of drugs, anesthetic
accident, heart block, acute myocardial infarction or
surgery.’
• Cardiac resuscitation, when applied to dying
patients, may restore cardiac function, but it does
not prevent death, it merely prolongs the dying
process.
15
CPR in terminally ill patients?

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• True or false A living will protect you from on wanted CPR
– FALSE
• True or false When you appoint a Durable power of attorney
he or she must follow your oral or written instructions.
– TRUE
• When deciding what life supporting treatment you allow your
should weigh the treatments burden vs the benefit.
– TRUE
• True or false The widespread adoption of do-not-resuscitate
(DNR) protocols has prevented CPR from being performed on
patients, who are unlikely to survive.
– FALSE
Quiz

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If you feel uncomfortable they will feel
uncomfortable.

18. • Stating clear
objectives up
front and
developing trust.
18
The most important element in communicating
advance directives is:

19. • Trust and Hope
• Uncertainty and
emotion
• Prevention of a
traumatic death
19
Discussions about advanced care plans should
include:

20. • “Tell me what you
understand about your
illness.”
• “We’ve just met and there is
so much going on with you
right now. To help me get to
know you better, can you tell
me about your yourself?”
• “I’m sure that this illness has
been a lot to absorb quickly.
How are you coping with
this?”
20
Encourage Patients and Families to Talk

21. • “I hear you saying that you didn’t feel heard by the
other doctors. I’d like to make sure that you have a
chance to voice all of your concerns.”
• “It sounds like Dr. Jones left you feeling very hopeful
for a cure. I’m sure he really cares about you, and it
would have been wonderful if things would have
gone as well as he wished.”
21
Do Not Contradict or Put Down Other Health Care
Providers. Yet Recognize Patient Concerns.

22. • “I am so impressed by
how involved you’ve
been with your father
throughout this illness. I
can tell how much you
love him.”
• “Your concern for your
family and not wanting
to burden them with
making decisions on
your behalf is heart-
warming.”
22
Demonstrate Respect

23. • Acknowledge the emotion
• Legitimize feelings
• Offer support
23
Conversations about end-of-life issues are
emotionally charged, when talking to patients and
families it is important to:

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Attending to Patient/Family Affect

25. •“Are you feeling scared? This must be terribly
hard.”
•“I can’t imagine what you’re going through, but
I’m impressed with how you’ve been able to cope.”
•“Making these decisions on your father’s behalf is not
easy.”
•“I wonder if it sometimes feels overwhelming?”
25
Acknowledge the Emotion

26. “I bet it’s hard to
imagine life without
your father—I can
see how close you
are to him.”
26
Identify Loss/Fear of Loss

27. • “It’s quite common for
someone in your
situation to have a hard
time making these
decisions—it can feel
like quite an enormous
responsibility.”
• “Of course, talking
about this makes you
feel sad—it wouldn’t be
normal if it didn’t.”
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Legitimize the Feelings

28. • “No matter what the
road holds ahead, we
are going to be there
with you.”
• “I am here to listen,
answer questions and
support your decisions.”
28
Offer Support

29. “You just mentioned
feeling scared. Can you
tell me more about what
scares you most?”
29
Explore

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Hope is the frame within which they
construct their future.

31. • Hope for the best but prepare for the
worst.
• Reframe hope.
• Focus on the positive.
31
Communicating with Hope

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• Name three things you can do to prepare to talk
with your patients/residents in end of life
planning.
– Explore your own feelings
– Know your subject matter
– Practice effective communication
• True or false Most people want you to make their
decisions for them.
– False
Quiz

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The importance of communication skills
at the end of life

34. 34
One of my favorite books to help people
make difficult decisions.

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Beyond Advance Directives, Conclusion

36. 36
Questions?

37.
Beyond advance directives: importance of communication skills at the end of
life. JAMA. (2015) Jul 20;294(3):359-65. James A. Tulsky, MD
Physician-older patient communication at the end of life. Clinical Geriatric
Med. (2000) Feb;16(1):175-204, Siegler EL, Levin BW.
A Patient Guide To Understanding Advanced Health Care
Directives Paperback – (September 6, 2011) by Maureen Kroning, MSN RN
Advanced Care Planning, Tips from the National Institute on Aging, (Feb
2012). https://www.nia.nih.gov/health/publication/advance-care-planning
Person-Centered Communication with Older Adults: The Professional
Provider's Guide 1st Edition, (2015) by Timothy A. Storlie
Hard Choices for Loving People, CPR, Feeding Tubes, Palliative care, Comfort
Measures, and the Patients with a Serious Illness. (2016) By Hank Dunn
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References