Transcript Document

End-of-Life Decision-Making
and the Role of the
Nephrology Nurse
Module 1
Techniques to facilitate discussion for
Advanced Care Planning (ACP)
The objectives of Module I
are to…
 Identify ESRD patients at risk to die in
the next 6-12 months.
 List 4 core skills for initiating advance
care planning discussions.
 Provide 5 examples of how to
implement advanced care planning
skills.
Introduction
 80% of Americans have a chronic illness
 Most will spend years managing illness
 In the final months of life, there will be
disability, poor QOL & hospitalizations
 Most will die suddenly, unprepared
 50% will be unable to make their own
decisions
 Most are willing to discuss and plan
Identify patients at risk to die
in next 6-12 months
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ESRD End-of-Life Demographics
Significantly shortened life span
Rising median age of ESRD population
Over 70,000 ESRD patients die per year
~23% die after decision to withdraw
High percentage with co morbidities
High in-hospital death
Unknown but low % die with hospice
Hospice Usage in ESRD Patients
Pts Who Chose Hospice:
 26% Withdrew from dialysis 65% went
to hospice
 74% stayed on dialysis 6% went to
hospice
(2009 Renal Network Data)
Expected Remaining Years of Life For
Dialysis Populations
No CKD
claim
All CKD
585.1-2
585.3-5
585.9oth.
66-69
24.3
45.0
15.9
41.6
51.0
70-74
28.8
49.4
28.6
49.5
52.5
75-84
49.9
80.8
58.5
73.3
89.5
85+
133.9
191.3
161.6
177.0
205.4
Male
59.3
91.8
57.6
86.6
101.3
Female
51.1
85.6
66.0
75.5
94.8
White
54.2
87.6
63.0
80.5
96.0
Af Am
59.3
87.2
54.0
95.0
90.4
Other
47.7
76.5
33.6
62.8
88.4
All
63.9
96.1
69.1
89.7
104.8
USRDS Annual Report 2010
Sentinel Events & Conditions that predict
prognosis of dialysis patients
 Serum Albumin < 3.5 gm/dl
1
year survival= 50%
2 year survival= 17%
(Goldwater, 1993)
Cumulative Survival following first
amputation after renal failure:
1996-2001
Level
N
30
day
60
day
90
day
180
day
365
day
730
day
Total
49,708
88.5
79.7
73.8
62.4
49.0
33.7
Toe
15,776
95.2
89.6
84.9
74.7
61.4
44.6
Below
Knee
23,952
89.3
80.5
74.7
63.3
49.5
33.7
Above
Knee
9,980
76.4
62.2
54.2
40.6
28.2
16.4
Eggers, NIH 2004
All Cause Mortality (%) After AMI by
Etiology of ESRD: 1996-2001*
Etiology
N
1 yr
2 yr
3 yr
4 yr
5 yr
Total
31,785
52.1
66.9
76.9
83.3
87.6
DM
15,460
53.0
68.8
79.4
86
90.5
HTN
9,112
53.9
68.8
78.6
84.5
88.7
Other
7,213
47.8
60.9
69.5
76.3
80.5
* Dialysis Patients only
Eggers, NIH, 2004
ESRD Cardiac Arrest: CPR survival
Lived to discharge
8%
Died 92%
Late Referral to Nephrologist
 More
 Hispanics,
Blacks
 Lower Serum Albumin
 Lower HCT
 Greater number malnourished
 S CR GFR
 More catheters
Stack AJKD 2/03
Relative Risk of Death
Late Referral patients
 At 6 months 1.65 (65% higher risk)
 At 12 months 1.57 (57% higher
risk)
 At 2 years 1.22 (22% higher risk)
(CI 95%)
Stack AJKD 2/03
Ask the Nephrologist
“Would you be surprised if
this patient dies in the next
6-12 months ?”
Emotional Symptoms of
Readiness
Anger
Hopelessness
Spiritual
distress
Anxiety
Fear
Dependency
Financial
distress
Depression
Why me?
Signs That a Patient May be
“Ready”
 Giving belongings away
 Increased hospital stays, medical decline
 Withdrawing from personal attachments
 Decreased interest in eating
 Increased sleep/fatigue
 They tell you
 You just sense it by their overall look
Examples of Verbal Cues
 “I don’t want to be a burden”
 “I don’t know if all of this is worth it to
me anymore”
 “I’ve had enough”
 “What happens if you stop dialysis?”
Core Skills
 The nephrology nurse has multiple
opportunities to initiate discussion and
provide guidance with decision-making
over time
 Collaborative team incorporates ACP
into the overall care plan
Advanced Care Planning ACP
and
Advance Directives
AD
are NOT the same thing
Advanced Care Planning is
NOT a “one-size fits all”
concept
Advanced Care planning IS
a process for:
Understanding, Reflecting, Discussing &
Formulating a plan with the patient
Guiding Principles
 Seek first to understand; let patient tell
his/her story
 Be there; offer opportunities many
times
 Focus on talking and learning; not
making decisions
 Encourage patient to reflect
 Listen, explore, and listen more
Core ACP Skills
 Initiate routine
and urgent
discussions
 Explore
understanding of
renal disease
progression
 Search out values
of living well
 Clarify statements
 Discover meaning
of experiences
Core of ACP Skills, continued
 Assist in
understanding ACP
 Explore barriers to
 Advocate for &
communicate
patient wishes
planning
 Assist in selection
and preparation of
proxy
 Make referrals
Initiate Routine Discussion
 It’s never too early to plant a seed
 Begin discussion prior to dialysis, and at
regular intervals e.g. care conferences
 Provide basic information first, then add
more discussion over time
 Incorporate as a component of good
patient care (“We’re trying to begin
these talks with all of our patients”)
Initiate Urgent discussions
 Person you would not be surprised died
in the next 12 months, e.g. sentinel
event, low serum albumin
 Frequent hospitalizations
 Declining functional status
 Verbal cues e.g. “I’m not sure all of this
is worth it to me anymore”
Where to begin?
Walk the path with patients
Explore understanding of
illness progression
 “Describe for me what you think your
kidney disease is doing to you.”
 “Do you have ideas of what
complications could happen to you?”
 “Are you interested in knowing more
about your illness and what might
happen?”
Explore values/goals on
living well
“What future or present experiences are
important for you to live well?”
 “What fears or worries do you have about
your illness?”
 “What helps you get through when you face
serious challenges in your life?”

RESPECTING CHOICES® Advance Care Planning
Clarify statements e.g….
“What do you mean
when you say…”
 The nurse says
 “I
don’t want to be a burden”
 “I don’t know if all of this is worth it to me
anymore”
 “I’ve had enough”
 “What happens if you stop dialysis?”
Explore experiences
… with last
hospitalization/complication
 “The
last time you were hospitalized (or
some incident) what was it like for you?”
 “Did
it change any of your goals or
values for the way you are living your
life?”
Explore understanding of ACP
 “Have
you ever written down any of
your thoughts about future medical
care?”
 “Tell
me what you’ve done?”
 “Why or why not?”
 “Are
you willing to begin to learn a little
more about what this involves?”
Explore patient barriers
to discussion
 “Why
is this a difficult topic for you to
talk about?”
 “What are your fears or concerns if you
talk about it?”
 “Are there any religious, cultural or
personal reasons why talking about this
may be difficult?”
Explore experiences
…in making health care
decisions for others
 “Have
you had any experiences making
health care decisions for a loved one,
perhaps even end-of-life decisions?”
 “What did you learn through those
experiences that might help you make
your own decisions or help those you
love make them for you”?
Assist in understanding
importance of ACP
 “You
have an illness that’s difficult to
predict if and when a complication may
occur”.
 “If this happens, it may leave you
unable to make your own decisions”
 “As health professionals, we would
need to turn to a loved one to make
decisions for you”
Understanding, continued
“Often, loved ones have little idea of what
kinds of decisions you would want”
 “Sometimes people avoid talking too much
about these things”
 “A proxy who has to make decisions is often
very stressed”
 “While we ‘hope for the best’ we also want to
help you ‘plan for the worst’”
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Assist in selection and
preparation of proxy
 Help patient choose a person who:
 Is willing, trustworthy
 Understands values/goals
 Is able to make decisions under
stress
 Is willing to understand the role they
need to play and the importance of
this ongoing relationship
Selection & preparation,
continued
 Offer to arrange meeting with chosen
decision maker to facilitate patient expression
of values and goals
 Provide information on what the role of the
decision maker might include, or what
decisions may need to be made
 Encourage decision maker to ask questions;
stay involved in patient’s care
Advocate for patient wishes
 Discuss concerns with patient’s
interdisciplinary care team
 Identify need or desires for outside supportspiritual leaders, mental health professionals,
palliative care & hospice
 Facilitate patient family care conferences to
assist patient in expressing values and goals
 To complete a written advance directive
Look For Other Modules To
Follow!
 Produced by the ANNA
Ethics Committee 2004
With a grant from ANNA
 In consultation with Linda
Briggs, RN, MS, MA Asst.
Director Respecting
Choices, Gunderson
Lutheran Med. Foundation,
La Crosse, WI.
[email protected]

ANNA National Office
East Holly Avenue, Box 56
Pitman, NJ 08071
www.annanurse.org